I Need Your Help Making Things Right

Well! I bet you are as surprised as I am to be seeing another post on this account after I assured everyone I would no longer be writing here. But the thing about concrete is, sometimes it has to be demolished when you need to lay a stronger foundation for better things. And that’s what we’re looking at here, in many ways. I should have–I needed to–make this post literally months ago, but PTSD doesn’t just “play nice” because you suddenly need to make something happen!

Because of the difficult things I wrote about in my last post, I had a huge mental block telling me I didn’t deserve to ask for anyone’s help. This block was further cemented by the unfounded belief that, well, there are perhaps millions of people in my situation, so what makes me think I’m deserving of help at all, much less while they continue to suffer?

But not only is that another manifestation of survivor’s guilt, it’s another version of something else I was always told, which was, “There are people being abused so much worse than you, you think what you went through was bad?” Only now, I can argue back against those gaslighting tactics. Now, I know that I was only told it “wasn’t that bad” because

  1. that’s what all abusers tell their victims, no matter what, and
  2. it’s a control tactic used to prevent you from leaving, to prevent you from seeking help, and to prevent you from drawing negative attention to the person who actually deserves it: the abuser.

Most significantly, I can finally stand in my truth and state in my own defense:

If you’re being abused so horrendously, for so many years, that your own psyche starts to split into different parts and versions against your will just to survive your situation, then yes, yes it really was “that bad.”

What I need help with is paying for the costs of having to immediately pack up and move to an undisclosed location for my safety, completely on my own, without any help from anyone, after being isolated and controlled and abused for years by the very people who made me believe they were helping me.

It had to be done, but due to multi-faceted financial abuse on top of everything else (the number one reason victims can’t escape), I am currently in a financial hole I simply CANNOT dig myself out of without help. The crux of the matter is, I really don’t need much, but without this little bit of help, I will be barely surviving for the next 5-6 YEARS at the bare minimum, even if nothing else were to go wrong within that entire time frame… And we all know things don’t work that way!

GoFundMe: Disabled Abuser Survivor Needs Help Starting Over

Literally throughout my entire life, I’ve been outright harmed or threatened with harm for even acknowledging non-verbally that abuse was occurring. To do what I’ve been doing lately, actually speaking out loud? I’m undoing decades of brainwashing to make these statements, and even though I wish I could’ve completed this sooner, thereby getting assistance sooner, I have nothing but compassion for my brain’s dilemma in trying to overcome this. The Universe has helped me realize that asking for help actually doesn’t take away from others getting the help they deserve. God and His angels have helped me see that it’s okay to tell the truth about what I’ve been through, because not only will it help me heal, but it will help validate the struggles of other survivors and remind them that they, too, are allowed to speak. We’ve spent too long waiting for permission.

I understand that not everyone is going to be able to contribute, but when I did the math, I found that if everyone who follows my accounts donated even $3, I could meet my goal. Yes, seriously. That is IT. So before you decide that what you have left to donate isn’t enough to make a difference to me, please consider that. You just have to believe that what you have to offer, actually matters. Because it does.

And no matter what, please share the fundraiser link above, for two reasons:

(1) I don’t use a personal Facebook, because my abusers and their disgusting web of lies is all on show there. To see the same people who have tortured me and others, going online pretending to be kind and typing things like “hugs” and “smiles” to poor unsuspecting good people, just makes my skin crawl like nothing else. But GoFundMe says “Sharing your GoFundMe on Facebook can increase donations by 350%” so if you could please share it to yours on my behalf, that’d be wonderful. It’ll especially help me reach those who want to help support someone like me today, on May 12th, International Awareness Day for Chronic Immunological and Neurological Diseases. I know I’m not some organization, but I’m a real person with a real problem who also happens to have a very real solution. I will be directly benefiting from any donation!

Just by itself, even if you excluded all my other conditions, M.E. is an extremely disabling disease that has been proven time and time again to have the lowest quality of life of almost any chronic illness: “…[A]pproximately 15 times worse than cancer and two times worse than having a stroke,” a fact that I would never have believed possible if I hadn’t been struck with it myself. Frankly, that I got out at all is already its own miracle. But additionally,

(2) Your sharing this might put it across the path of someone else struggling silently in an abusive situation, inspiring them to keep fighting for their own freedom, or even just to put a name to what they’ve experienced.

There’s much more detail at the official fundraiser link if you want it, where I tried to explain things to all the people who haven’t been following my accounts for almost a decade.

If you’ve ever said to me, “I wish there was something I could do to help you,” this is your chance. Thank you if all you can do for now is read this, thank you endlessly if you donated any amount at all to help me restore my life, and no matter what, please, please, please share the fundraiser link: gofundme.com/kitwillthrive

 

— Kit (will thrive!)

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The Parts of ME: Does “Post Exertional Malaise (PEM)” exist in other diseases?

When the National Academy of Medicine (NAM, formerly the Institute of Medicine/IOM) released its recommendations for Systemic Exertion Intolerance Disease (SEID) as a replacement for “ME/CFS,” I saw a lot of people spreading this myth: That “post exertional malaise” (PEM) is what differentiates myalgic encephalomyelitis (M.E.) from other illnesses. This is not true, nor is this what’s explained in the NAM’s report. At most, the report says that the presence of PEM helps distinguish it from other conditions, while it is what best distinguishes “ME/CFS” from idiopathic chronic fatigue. PEM alone is not specific to M.E., Chronic fatigue syndrome (CFS), or SEID, just like unrefreshing sleep is not specific to any one disease. Continue reading “The Parts of ME: Does “Post Exertional Malaise (PEM)” exist in other diseases?”

ME vs. CFS vs. SEID Information & Advocacy Chart

  • Click on the chart for the full-size version, as your browser may have resized the one below.
  • If you’d like an extra large version (say, for special eyes), click here.
  • To download as a PDF file (which I optimized for printing), click here.
  • For Facebook upload onlydownload this special Facebook size of the graphic, because Facebook has annoying rules about photo dimensions.
  • On Twitter? Click here now to Retweet/Quote/etc. the graphic
    • If you try to share the image anywhere else and it uploads blurry, link to this direct image.

ME CFS SEID chart via arainbowatnight


  • Click on the chart for the full-size version, as your browser may have resized the one above.
  • If you’d like an extra large version (say, for special eyes), click here.
  • To download as a PDF file (which I optimized for printing), click here.
  • For Facebook upload onlydownload this special Facebook size of the graphic, because Facebook has annoying rules about photo dimensions.
  • On Twitter? Click here now to Retweet/Quote/etc. the graphic.
    • If you try to share the image anywhere else and it uploads blurry, link to this direct image.

You may share any of the graphics or downloads linked in this post.

Today is International Awareness Day for Chronic Immunological and Neurological Diseases. Feel free to share this page or download the graphic and share it on social media with friends, family, and your circles. Like most diseases, people never hear of this one until it happens to them or someone they love, but facts about classic M.E. have effectively been buried beneath 30 years of misinformation. Many have lived with these diagnoses for years and never heard any of this before! It doesn’t have to be like this.

I’m hoping people diagnosed with CFS (or diagnosed with “ME” but by using CFS criteria, which happens often in places like the UK) will read this, think twice about how exactly they got their diagnosis, and begin looking for the real cause of their symptoms with a doctor’s help. Or, if they do unfortunately meet the criteria for M.E., they will learn what they’re really up against, how to manage this disease appropriately, and might even be able to find specialists to help with specific symptoms. Learning that you have the real M.E. also gives you the opportunity to slow disease progression with things like mitochondrial support, immunoglobulin replacement therapy, treatment for secondary infections, and energy management such as pacing and switching, in contrast to forced exercise most recommend. Repeated episodes of paralysis can cause additional permanent damage to the muscles; those unaware they have M.E. wouldn’t know this.

Just remember: Whatever your symptoms, whatever your diagnosis, all of us in this community understand your suffering and want the best for each other. If you’ve had a long day of advocating, here’s some very good news, and your invitation to rest.

With Love,

a rainbow at night


Quick links:

The Parts of ME: What If It Were You?

Throughout this series, but especially in this part, I only ask you to remain open. But what does that mean? To quote Thich Nhat Hanh: “Usually when we hear or read something new, we just compare it to our own ideas. If it is the same, we accept it and say it is correct; if it is not, we say it is incorrect. In either case, we learn nothing.” So by being open, we agree to allow the information in and integrate it with the use of our intelligence instead of thoughtless reaction.


So much of the M.E. vs CFS debate is clearly a matter of perspective.

If you’ve been offhandedly diagnosed with myalgic encephalomyelitis (M.E.) or diagnosed with chronic fatigue syndrome (CFS), there’s a good chance you tend to to speak with those in the community who also have your symptoms. It’s easy to reinforce your own version of things when there’s nothing to challenge it; if everyone around is just like you, who wouldn’t feel right? You generally support research efforts into “ME/CFS” because you feel confident this research will actually help you and others, so your main advocacy cry is “More funding!”

But hold on…

Would you still feel just as confident that research being done on your illness was ACTUALLY being done on YOUR illness if all the people you talked to didn’t have your symptoms? Or would that make you wonder which disease researchers were ACTUALLY studying/what group of people the studies were ACTUALLY helping?

To quote a friend: “Before you jump on the bandwagon and decide that this is just a silly name war, consider the implications.”

What if everyone you talked to with your illness said they actually weren’t very fatigued and could exercise five times a week? Your thoughts are probably the same as what an M.E. patient thinks when we hear of someone getting an M.E. diagnosis (1) without getting sick after a virus, (2) without having any neurological damage, and (3) without experiencing any exertion-induced muscular fatigue and/or pain (with subsequent exertion-induced paralysis): How can they have a disease without any of the core manifestations of that disease?

Or, what if your version of CFS were suddenly renamed to “idiopathic rash disease” just because a lot of people with CFS get rashes? Over time, your disabling fatigue, post-exertional malaise, pain–none of it is required anymore for this new diagnosis, BUT! It’s now called “CFS/Idiopathic Rash Disease.” You might ask, but Kit, if none of the symptoms for CFS are required for Idiopathic Rash Disease, why on earth was it ever combined? Well, because the Idiopathic Rash group advocated so strongly that the illnesses should be combined–after all, even though they have little in common now, it did originally start as a type of CFS, right?–that it ultimately becomes known internationally as “CFS/Idiopathic Rash Disease.” This looked like a good thing to the thousands of people who had no idea what “real CFS” was, so there wasn’t much protest from society at large…even though this combination further muddled everything (especially research!) by combining what used to be called CFS–your disabling fatigue, pain, sleep problems, etc.–with a new category that the government invented to study unexplained rashes.

Meanwhile, CFS advocates are feeling increasingly helpless that the majority of their patient group is being replaced with something that only barely describes their condition–your condition!–pleading, “This rash disease used to be called CFS, because we all had excruciating fatigue and post-exertional sickness! What is left to study our illness if all research is going towards unexplained rashes that could be caused by a million different things? Some of us are dying!” Incredulously, the people diagnosed with Idiopathic Rash Disease truly think they have the same illness as you, as classic CFS, even though they didn’t need nor have any of your symptoms for diagnosis.

How do you suppose research on “CFS/Idiopathic Rash Disease” will actually study people like you, now, when classic CFS is being buried year after year by more and more people who just want answers to their rashes…? And truly, they deserve those answers, don’t you think? You wouldn’t want to deny them their own research just because the government made a nonsensical decision to replace CFS with a focus on this new rash disease. But nonetheless, both groups are synonymous with each other, now, and across the globe people are starting to forget that CFS was once its own category, with its own symptoms that had nothing to do with idiopathic rash.

One day, you realize thirty years have passed, and all the new patients being diagnosed with “CFS/Idiopathic Rash Disease” don’t even remember when CFS was its own illness anymore. Funny thing is, everyone is quick to remember the part where Idiopathic Rash Disease started because of some CFS patients with rashes, but no one seems to remember that that’s where their similarities ended. You’re no closer to science figuring out what’s wrong with you, nor is anyone with Idiopathic Rash Disease any closer to finding out what’s really causing their symptoms. In fact, these new, uninformed patients are now yelling at you, an original CFS patient, claiming none of this even matters. Why are you so caught up on a name? Idiopathic Rash Disease is the same as CFS because it was created from CFS patients. And if no one likes the name of “idiopathic rash disease” maybe we’ll just petition the government to call this “CFS” again–that would help everyone, right, if we just took all these random rash patients and said they have CFS?

Hopefully that scenario upset you. Hopefully it made your head spin to think that anything so nonsensical and unscientific could ever happen. Maybe you’re even outraged and ready to end this hypothetical situation…

But this is exactly what happened to people with classic M.E. when CFS was invented. CFS was created to study “chronic fatigue of undetermined cause” and as the years have passed it’s morphed into a hybrid that still doesn’t describe any one condition. And it is not the fault of the CFS patient (or “ME/CFS” patient) that they’ve been so misinformed by the people they thought they could trust, or that those in power leave out major details when discussing ME and CFS history. But if it were you, if you REALLY WERE being replaced and forgotten in favor of a new illness that doesn’t describe your disease, wouldn’t you want someone to speak up for you?

So why do people look at us like we’re doing something wrong by reminding everyone that chronic fatigue syndrome is not M.E.? I quote again: “Before you jump on the bandwagon and decide that this is just a silly name war, consider the implications.”


Luckily, the illness defined by Ramsay et al. called myalgic encephalomyelitis is not that easy to get. But

  • we all got sick after a virus;
  • we all have measurable neurological damage; and
  • we all have a very distinctive muscle pathology, a sign that was described by multiple doctors who all came to the same conclusion without having any communication with each other: “Muscle fatigability, whereby, even after a minor degree of physical effort, three, four or five days, or longer, elapse before full muscle power is restored and constitutes the sheet anchor of diagnosis. Without it I would be unwilling to diagnose a patient as suffering from ME, but it is most important to stress the fact that cases of ME of mild or even moderate severity may have normal muscle power in a remission. In such cases, tests for muscle power should be repeated after exercise.” (Quote by Dr. Melvin Ramsay, although all M.E. experts explain this same phenomenon in their own way)

ME CFS SEID criteria-only

And finally, none of us are being studied at all unless we piggyback into research with other illnesses. People with classic M.E. have been forgotten, and this has been worsened irrevocably by (1) fighting to have ME and CFS combined into “ME/CFS” without fully understanding what this does to us or how much it further harms everyone, as well as (2) efforts to rename CFS to M.E., which is entirely illogical. Several recent polls have revealed that patients prefer the name M.E. because it sounds more legitimate, even though most people diagnosed with CFS–and even people diagnosed with ME without thorough inspection–do not actually have classic ME.

It makes no sense to rename CFS (and SEID) to “M.E.” without also changing the diagnostic criteria to actually reflect M.E.This is not 1988, the CFS bucket no longer contains just people with my illness, or just people with your illness, but dozens of misdiagnoses combined under one label. So why on earth would we rename one condition to another condition that it isn’t? I think the only thing these poll results prove is just how misinformed our community really is about our history, which is a major reason I’m writing this series. (I also left a comment to that post.)


So what’s my point in all this?

People who do get this infectious neurological disease–classic M.E. as it was defined before being unduly influenced by CFS and psychiatry–deserve to be and should be studied on their own, NOT forced to share the diagnosis and subsequently the research opportunities with other illnesses, all because a mistake was made thirty years ago. It’s not about the name itself as much as what the name used to stand for: I don’t care if we start calling it Egg Disease, as long as it actually describes and studies us, and only us! Until we consistently group people like us together and study them, we will never know what is causing this illness or how to relieve the suffering of people who move into the chronic, incurable, relapse-remitting or progressive forms.

All of these outbreaks didn’t just just magically stop occurring when CFS was invented. M.E. outbreaks are still happening even though the epidemics are no longer being recorded or studied. Cort Johnson wrote that Dr. Byron Hyde mentioned having “reports of over sixty” M.E. outbreaks from just 1988 to 2003, which were “no longer figured in the literature” and “were not given any mention in the ICC” (International Consensus Criteria). This should horrify people, and yet…

So please tell me how people with classic M.E. are supposed to be okay with what’s happened. Please tell me how research on people who became gradually fatigued is supposed to help people who all got sick after a virus. Please tell me how research on people who are chronically fatigued is supposed to help people whose breathing muscles are so weak many must sleep propped up or suffer from hypoxia; who exhibit clinical heart failure after exertion; who can’t write without risking arm paralysis; who can’t get up from the lying position using their back and abdominal muscles (which used to be such a prominent feature at the onset it was almost a diagnostic sign). And please tell me how giving people a diagnosis of M.E. without requiring the core manifestations, without checking for bacterial infections like Lyme disease, or even without giving them an MRI, is supposed to result in anything other than continued disaster (for us and the integrity of research).

If you want to pretend none of this is true–that you didn’t read any of this, that infectious M.E. doesn’t still exist–you won’t run into any shortages of other places to go. There are countless patient groups for you to join that will say none of this matters because it’s not THEIR symptoms that are being ignored. You’ll still have those options… But I ask you to contemplate having your disabling condition replaced by idiopathic rashes, like we’ve had our disabling condition replaced by idiopathic fatigue. After reading this, you are aware that we still exist and that M.E. epidemics are still quietly occurring. Don’t forget us.

All of that said, I do think we’re too far gone to erase CFS or SEID, despite some claiming it is the only way forward. I do not think it is the only way, nor do I think it’s even plausible. In reality, while we’re fighting for change, people are going to be misdiagnosed with CFS (and SEID, if it’s implemented)…including thousands of people with M.E. This is terrible because it diagnoses us too late for intervention, doesn’t give us the treatment advice we need in time, and doesn’t allow us to partake in research that applies specifically to us. But not all “ME/CFS” research has been fruitless. Some researchers select specific subsets–such as focusing on post-viral acute-onset cases while at the same time selecting patients who meet the Canadian Consensus Criteria, the only criteria that specifically require muscle fatigue–and we do get somewhere. That is exactly how the recent “robust evidence” paper selected their patient group, and it most likely included many patients with actual M.E. because of it; to that effect, the results actually match historical knowledge about ME in several ways. I also personally hypothesize that if SEID inadvertently catches a greater number of people with M.E., coupled with increased funding, this may one day force science to separate us into our own group yet again, if we repeatedly show abnormalities that others CFS subsets cannot reproduce… But I’ll have to explain all that in a later post, as this one is getting uncomfortably long.


Lastly, consider this:

There are thousands of rare diseases that will never be studied or researched. I think sometimes we get lost in the idea that it’s others’ jobs to fix us instead of our job to continue living our lives as best as possible. It’s wonderful that we’ve created a system to study diseases and relieve suffering, even if those systems get it very, very wrong sometimes. But M.E. has existed for centuries and will continue to do so, no matter what people call it, no matter how many people try to say we don’t exist. So listen to me:

I believe you. I’m sorry we’re on this particular journey together. And it is my most sincere wish that you not only discover the truth about this disease to the extent that it will help you (the books by our experts are some of the most validating things you’ll ever read) but that you’ll also do everything you can to increase your quality of life while you’re here, because you do matter. Dare to find enjoyment in your life, even if it’s difficult, because your life isn’t over just because you or a loved one got sick. In the mean time, we have to help each other, and I hope to do my part by not letting the truth die out. If you are also a person with classic M.E. or their carer, I invite you to share your story with the world, as well.

“If you destroy the record, you destroy the truth.

I’ve learned in my adult life that the will to silence the truth is always and everywhere as strong as the truth itself. So it is a necessary fight we will always be in: those of us who struggle to understand our common truths, and those who try to erase them. …

All so precious and fragile. Don’t let anyone tell you that the truth can’t disappear. If I believe in anything, rather than God, it’s that I am part of something that goes all the way back to Antigone, and that whatever speaks the truth of our hearts can only make us stronger. Can only give us the power to counter the hate and bigotry and heal this addled world.

Just remember: You are not alone.”

(Paul Monette, “Last Watch of the Night: Essays Too Personal and Otherwise.”)

Until next time…

a rainbow at night


See also:

Books and Materials on Myalgic Encephalomyelitis:
  • Missed diagnoses: Myalgic Encephalomyelitis & chronic fatigue syndrome (2nd ed.), by: Byron M. Hyde, M.D. with a foreword by Professor Malcolm Hooper. (2011)
  • The Clinical and scientific basis of myalgic encephalomyelitis/chronic fatigue syndrome, by: Jay A. Goldstein, M.D. and Byron M. Hyde, M.D. (1992)
  • Myalgic encephalomyelitis and postviral fatigue states: The saga of Royal Free disease (2nd ed.), by: Melvin A. Ramsay, M.D. (1988)
  • Click here for more Resources on M.E. and CFS

The Parts of ME: Introduction & History: How Did We Get Here?

It takes a long time for me to integrate new information.

And as anyone in the ME community knows, we’ve had a ton of that since February. Instead of blindly powering through, waiting has given me a month to gather facts, opinions, and input from our advocacy leaders, my trusted friends, and even the IOM committee members. The best way for me to write and for you to read (that is, if you want) is to break it into parts.

Please note that each post will be able to stand on its own: Don’t fret about having to remember plot-lines from week to week; this is not a story. This is definitely. not. a story.

All right. Fasten your seat-belts, gather your friends, because here we go. It’s time to make some sense out of all this.


The Parts of M.E. (Upcoming posts)
  1. Introduction & History: How did we get here?
  2. What if it were you?
  3. Does “Post Exertional Malaise (PEM)” exist in other diseases?
  4. The IOM Committee Speaks Out
  5. The Problem with M.E.-only Advocacy, and How SEID May Help
  6. Does encephalomyelitis really exist in Myalgic Encephalomyelitis (ME)?
  7. The ICC or CCC as an M.E. definition: Are we promoting bad science?
  8. Why do we advocate?
Note: Some of these might be combined or further segregated as I go along.

Let’s begin by clearing something up: How did we get here? The confusion between M.E. and similar states has always been a point of controversy. Today’s over-inclusion involves M.E. vs Any other disease with chronic fatigue; before CFS, the over-inclusion was of M.E. vs. Any other disease with chronic post-viral fatigue. These illnesses have also always been thought by many to be purely psychological in origin…along with 95% of all other ailments, because that’s just what people did back then. (Hysterical wandering uterus, anyone?)

But why hasn’t M.E. moved forward with all the others, especially after decades of documented outbreaks and with so much research proving it’s an acquired disease of non-mental origin?

The major denial of M.E. in both the US and UK has stemmed from people with too much power failing to examine a single patient.

McEvedy and Beard–both psychiatrists*–wrote their deplorable 1970 re-analysis of the 1955 Royal Free epidemic without doing a physical examination on a single patient, basing their feedback on data which they decided could just as easily have been hysteria…not out of some moral obligation to scrutinize data, but because McEvedy was a psychiatry student who needed an easy paper to write for his PhD. Professor Hooper writes of this:

“McEvedy stated that he did not examine any patients and undertook only the most cursory examination of medical records. This was a source of great distress to Melvin Ramsay who carried out the first meticulous study of the Royal Free outbreak. The outcome of McEvedy’s work has been described by one of the ME/CFS charities as “the psychiatric fallacy”.” (1)

Dr. Hyde writes of his personal visit with McEvedy in 1988:

“Why had he written up the Free Hospital epidemics as hysteria without any careful exploration of the basis of his thesis? I asked.

His reply was devastating.

He said, ‘It was an easy PhD, why not’.” (2)

While over in the US, it is well-known that the CDC did the exact same thing:

In response to several 1980s M.E. outbreaks, CDC investigators looked only at patient charts–NOT actual patients–and returned to their offices to make jokes about our presumed “hysteria.” It wasn’t until the doctors attempting to manage these outbreaks took over $200,000 of their own money to pay for MRIs, that they found their patients had brain lesions indistinguishable from those found in people with AIDS; because these findings were not seen in ALL patients, they were not taken seriously, despite being consistent with myalgic encephalomyelitis. In 1988, the CDC christened the continuing outbreaks as a new illness–chronic fatigue syndrome (CFS)–effectively because three M.E. experts left the committee early due to a lack of patient information and the remaining committee’s preoccupation with Epstein-Barr Syndrome. (2)

From the criteria that developed to study CFS (which was only intended “to provide a rational basis for evaluating patients who have chronic fatigue of undetermined cause“), we have helped cultivate an old mess that still exists today: Thousands of people diagnosed with everything under the sun, whose illness is being called myalgic encephalomyelitis. This includes thousands who don’t meet even a single criterion for what was actually M.E. before the invention of CFS or the watered down post-CFS model of ME that exists in many countries today.

ME CFS SEID criteria-only

As you can see, this is the reason some diagnosed with CFS do have M.E., and the reason much research does still apply to M.E. even if the titles “CFS” or “ME/CFS” are used. The trick lies in checking the methodology: If patients were selected using the ICC or CCC (especially in addition to another criteria), there’s an excellent chance the results could apply to classic ME. If they were selected to meet certain additional M.E.-like criteria, such as a post-viral onset, even better. But if patients only had to meet one CFS criteria (or something equally nonsensical, such as the UK’s “NICE guidelines for CFS/ME”), proceed with caution, because this may mean the only thing the participants had in common was “a fatiguing illness.”

“Even if the truth is buried for centuries, it will eventually come out and thrive.” (Burmese Proverb)

To be continued…

a rainbow at night


(P.S. – I thought I should finally publish a Facebook page so I can be engaged with the wonderful groups and people there, and also share things that are both too long for my twitter and too short for blog posts. Watch it for updates of new posts, things relevant to ‪‎Myalgic Encephalomyelitis‬ and related diseases, ‪Lyme Disease‬ and related content, ‪Buddhism‬ and ‪spirituality‬ (theists and non-theists welcome), ‪Mindfulness‬ and other meditations, ‪‎coping‬, ‪advocacy, and more. You CAN post to the page, but things will be moderated–checked by me for inappropriate content before they go public–to keep it a safe place: Differing opinions are NOT seen as confrontational, just don’t talk down to others. :) Thank you for your “Like”!)

Explaining to Those with “ME/CFS” That They Cannot Have Both

ME CFS SEID criteria-only

Here are some things I used to think about people who tried to tell me chronic fatigue syndrome (CFS) was different from myalgic encephalomyelitis (ME):

  1. They’re just trying to cause a problem where there isn’t one.
  2. They’re “those advocacy-type people” who “make a big deal out of everything.”
  3. They just want it to sound more serious, when it’s actually the same illness.
  4. It really doesn’t matter what people call it; they just want their disease to be “special.”

Yes, I *legitimately used to think these things.*

Have you ever wondered why people continue using terms like “ME/CFS” “CFIDS/ME” (and now “ME/SEID”), despite being confronted with information that clearly details their differences? Ever wanted to inform someone you care about, but aren’t sure how?

I recently witnessed this exchange that took place across several days, about what all too often happens when people try to educate others on this matter. Brooke and her friends have graciously allowed me to post their conversation on why people resist this truth so fervently, as a guide for all of our understanding.

(She would post it on her own blog, but now lacks the cognitive flexibility to organize and edit as I’ve been blessed to accomplish here over the past week. I’ve edited the quotations only to clarify the intended meaning and combat the effects of cognitive disability.)

“All truth passes through three stages. First, it is ridiculed. Second, it is violently opposed. Third, it is accepted as being self-evident.” Arthur Schopenhauer, German philosopher


Renee Roszkowski: “Just got called ‘disrespectful’ for trying to educate on the fact that M.E. and CFS are not the same thing and the term ME/CFS is not really a good term.”

Brooke: “I’m sorry to hear that. Unfortunately, it’s not too uncommon for (some) people diagnosed with CFS to get upset when people try to explain the difference. I can understand: They go so long not knowing what’s wrong with them, being judged, told it’s all in their heads, etc, and then a doctor finally gives them a diagnosis frequently linked together with a very real, fairly well-understood, officially recognized neurological disorder, so they want to cling to that. Being told they may not have M.E. (and most likely don’t), puts them back in the position of, “Well, then what’s wrong with me?” And that’s difficult to accept.

It’s hard for those diagnosed with CFS to accept that they *don’t* actually have a diagnosed illness, yet; that all they have is a diagnosis that says doctors don’t know what their diagnosis is; that it’s not a single, treatable illness able to be researched like so many have been led to believe. (It was never intended for CFS to be its own disease; it was intended to “to provide a rational basis for evaluating patients who have chronic fatigue of undetermined cause.” ¹). Finding out that they need to go back to pushing doctors to do whatever tests are necessary to find their *true* diagnosis can be extremely disheartening. …

It’s just difficult to help people get past the initial frustration or fear-induced reaction of disbelief, and help them move on to the idea of, “Hey, if I don’t actually have M.E., there’s a decent chance whatever I *do* have has at least some level of treatment available–maybe even a cure.” It’s difficult to go back to pushing for answers, but it is oh-so-worth-it for those who finally find them, and find some level of relief from their symptoms!

Renee: “I can totally understand, having been diagnosed with CFS, but actually having Chronic Epstein-Barr Virus, endometriosis, probable POTS (not yet diagnosed but I meet the diagnostic criteria), and potentially having a thyroid disorder, ALL of which have fatigue as a major symptom. I totally understand.”

Brooke: “Yeah, a lot of people diagnosed with CFS also have other diagnoses, which is kind of crazy if those other diagnoses can explain their fatigue, because a requirement for a CFS diagnosis is that your fatigue is not explained by any other illness ² (again differing from M.E., which, like any other neurological illness, you can have even if you also have other conditions causing similar symptoms). Why do doctors diagnose people with CFS if their symptoms are explained by other (testable) conditions? Not only is that medically incorrect/[completely against the criteria for diagnosis], it just doesn’t make sense to me. Diagnosing these individuals with CFS [when other conditions explain their symptoms] then saying it’s the same as M.E., is like doctors issuing a statement that everybody with a condition that causes any form of fatigue will now also be diagnosed with cancer.

Jennifer Phillips: “What people mean is too often not what actually gets heard. ‘CFS is not a real diagnosis’ can all too easily get heard as ‘CFS is not a real disease and you’re making up how sick you are.’

You need to approach it like this:

“You probably know that CFS captures a lot of different diseases that doctors just don’t know how to diagnose, right? People with CFS are sick, but not all in the same way. But M.E. has a distinct diagnosis and known cause. So if you’ve been diagnosed with CFS, you may or may not have M.E., depending on if the doctors have done these diagnostic tests or not. If you don’t have neurological problems, you probably do not have ME. This does not mean you are not sick, but that the knowledge about M.E. likely can’t help you and chances are your doctors need to keep figuring out what your CFS really is from.

Brooke: “That’s generally how I approach it when explaining to people who don’t already know all this stuff. I’m a bit more blunt (or rather, I just don’t take the time/energy to be extra careful in wording) with people who I know already get it and have the same views, but I agree, when educating you do have to be careful not to come across as saying the person is not sick. Most people diagnosed with CFS have heard that too much in their lives, and will be quick to get defensive–I know, because at one point I, too, was (mis)diagnosed with CFS. The vast majority of people with CFS don’t have M.E., so in a way I ‘lucked out’ once I had the CFS diagnosis, in that it wasn’t too hard to find the accurate diagnosis from there (with the proper tests to correctly diagnose it). But I do think most people with CFS have at least one physical illness of some kind. Even for those whose illness is psychiatric, that’s nothing to look down on. (For example, one study found over 30% of individuals with Major Depression were misdiagnosed with CFS: “Findings indicated that 38% of those with a diagnosis of a Major Depressive Disorder were misclassified as having CFS using the new CDC definition.” ³) There are often very real chemical/physical causes behind mental illness, too. They simply need to find the truth, whatever their true diagnosis is, so they can look for appropriate treatments.”

Renee: “I told them that I have CFS and a friend with ME, so I don’t think I sounded dismissive.”

Brooke: “One of the issues I see all too often is that many CFS patients actually *don’t know* that CFS includes people with lots of different illnesses. They’ve actually been told by their doctors and others that CFS is one single illness (“otherwise, why/how would anyone research it?”) and that “it” is synonymous with ME. They think that as long as you have unexplained fatigue lasting six months or longer, you have ME. Getting people to understand that (1) there is no single “it” when it comes to CFS, (2) that ME is something *entirely* different (most M.E. patients don’t even list “feeling fatigued” as a major symptom; our fatigue is at a cellular level and can contribute to the transient paralysis many of us experience), and (3) that *every* diagnosis of CFS is a misdiagnosis [because CFS is not a single disease but a diagnosis given when you have unexplained fatigue, nowadays particularly when you have unexplained fatigue with a post-exertional crash] – that can be a real challenge.”

Jennifer: “Which is why I phrase that point up front, as something they either know or don’t know, *not* something open to debate or telling them what to believe. Like you said, that confusion is why you want to educate people.”

Richard Heckart: “A closed mind is worse than an empty one. That’s my new saying from now on. Pass it on.”


To additionally put this in perspective for you:

It’d be like if the government suddenly stopped diagnosing Multiple Sclerosis and started calling all new cases “Weak Leg Syndrome,” deciding that the primary symptom of this new syndrome is weak legs. Eventually it gets dubbed “MS/Weak Leg Syndrome.” And now they’re saying that all you have to do to help weak leg syndrome is exercise because some people got better that way; they think other people simply have weak legs because they’re too depressed to move. Oh, and because MS = Weak Leg Syndrome now, no one ever gets diagnosed with actual MS anymore, so people with actual MS never get the correct life-saving treatment, therefore everyone who actually has Multiple Sclerosis, dies. Sounds crazy, right? Can you see this actually happening with any other well-known disease like this? Not at all. But that’s what happened to people with classic ME.

I hope people understand we are not just trying to nag you, or get validation for “our special disease” while leaving out everyone else. This isn’t a club anyone wants to be in. Everyone is suffering because of this international confusion. And because you can’t reliably study anything that isn’t clearly defined, no matter how many times they rename it or move around the same criteria, CFS still won’t be its own disease. There was no need to ever create CFIDS/CFS/SEID when the illness occurring in the 1980s epidemics already had diagnostic criteria, it already had a known cause, and it already had a name: Myalgic Encephalomyelitis. But instead of continuing to use it, the government created something entirely different, and all government-funded research on people with classic M.E. abruptly stopped. 

If you get diagnosed with CFS but don’t meet the diagnosis for the original illness (M.E.), it means you have something else that your doctors haven’t yet identified, ranging from the potentially treatable to the potentially fatal. So please continue to educate yourselves, *and* your doctors, because they are not omnipotent gods incapable of mistakes. There are also things you can do to slow down the progression of M.E., if you do indeed have it. And last but not least, don’t think that just because you have Post-Exertional Malaise (PEM), that you automatically have ME, because post-exertional malaise does exist in other diseases.

I have a friend in the UK who’s been diagnosed with “ME/CFS” for several years without having ever been given an MRI. But yet she’s in a wheelchair, getting worse, and shows several defining symptoms of MS.

Maybe she just has Weak Leg Syndrome and needs to walk it off…

a rainbow at night


Resources for M.E. and CFS

Note: Because of thirty years of confusion, some information labeled under CFS may be relevant to M.E., since some researchers use additional characteristics and biomarkers to select for different subsets of patients; for example, selecting the most severely affected (which through no coincidence tend to be those with M.E., often due to years of being told to exercise when this leads to disease progression and premature death), those with an acute viral onset, and those who met diagnostic criteria which required muscle fatigue on exertion. Likewise, not all information labelled “M.E.” is actually referring to the specific disease of myalgic encephalomyelitis, and may only be borrowing the name while in fact the data therein describe general CFS or “ME/CFS.”

(1) Holmes, G. (1988). Chronic Fatigue Syndrome: A Working Case Definition. Annals of Internal Medicine, 387-387. “We also present a working definition for the chronic fatigue syndrome designed to improve the comparability and reproducibility of clinical research and epidemiologic studies, and to provide a rational basis for evaluating patients who have chronic fatigue of undetermined cause.
(2) The IOM recommended on Tuesday, February 10, 2015, that this requirement be lifted, but please bear in mind this has not yet been implemented by the CDC or become customary for doctors; diagnoses of CFS are still and have always been made on the basis of unexplained fatigue, whereby any other diagnosis is supposed to disqualify you from having CFS, because CFS is a diagnosis of exclusion, i.e., not a specific illness but a category people are put in when doctors cannot explain your fatigue and other symptoms, even if your symptom of fatigue is post-exertional fatigue.
(3) Jason et al. Evaluating the Centers for Disease Control’s Empirical Chronic Fatigue Syndrome Case Definition. (2008). Journal of Disability Policy Studies, 20(2), 93-100. Almost 2 of every 5 people diagnosed with Major Depression meet all the criteria for CFS, too. “Findings indicated that 38% of those with a diagnosis of a Major Depressive Disorder were misclassified as having CFS using the new CDC definition.”

M.E. Demonstration in San Francisco on May 12th: “30 Years of Neglect”

Today’s post comes to you with a mix of emotions. Hope. Grief. Joy. Bittersweet, if there were ever a scenario in which to feel it.

Erica Verrillo e-mailed me last week to share some important news. For this year’s awareness day on May 12th, there will be a demonstration at HHS headquarters in San Francisco to raise awareness of myalgic encephalomyelitis. The information reads as follows:

JOIN US IN SAN FRANCISCO ON MAY 12!!
 
On Monday, May 12th from noon-1PM there will be a gathering at HHS headquarters at the Federal Building (90 Seventh Street)
“30 Years of Neglect”
 
30 years ago the town of Incline Village, Nevada was struck with myalgic encephalomyeltitis (ME), a neurological disease that HHS derisively named “chronic fatigue syndrome.” Since then, over a million people have been struck – worldwide, between 17- 20 million. In one quarter of the cases – 250,000 people in the US – ME leaves its victims bedbound. And, it kills.
HOW MANY MORE MUST DIE?
 
What has HHS done in the past 30 years to prevent the spread of this disease?
Absolutely nothing. HHS has stood by while over a million people have fallen.
·        HHS has failed to fund research
·        HHS has failed to provide accurate information to physicians
·        HHS has actively lobbied against patient interests
Please join us at the Federal Building on 90 7th Street on May 12th noon – 1PM!
 
To draw attention to the fact that ME not only disables but can kill its victims, we will be displaying a line of empty wheelchairs with pictures of people who have died of ME, and we will read their obituaries.
Afterwards, we will go to McKesson Plaza to take our message to Dianne Feinstein. (5 blocks from Federal Building – there is a bus stop close by.)

This will be a peaceful demonstration. (We have a permit.) For your convenience, there is a bathroom in the café next to the Federal Building.

For more information please contact Erica at everrillo@yahoo.com

If people were diagnosed from the onset and their doctors knew that enforced rest could mean the difference between a possible remission or mild form of the disease, or permanent damage and eventual death, how many lives could be saved from this disease that still has no cure or treatment?

People with M.E. are at a great disadvantage when it comes to rallying–we’re usually too sick to do it. Rarely is there a grace period between falling ill and disease progression–every stage of M.E. is a disabling level of illness, or else we’d have raised a much larger fuss by now. But if we have weeks of planning in advance, some might be able to make it.

I never participate in “International ME/CFS/FM Awareness Day,” as I feel the loud cries of “combination advocacy” hurt us all. We just want the truth out there, but those of us with M.E. get forgotten under accusations of trying to stop progress. But we’re not. It is fact that “chronic fatigue syndrome” was an invented term for what was actually an M.E. outbreak. The CDC ignored M.E., created new criteria for diagnosis that was purposefully written to focus on chronic fatigue, and called this “new” illness “CFS.”

“The name myalgic encephalomyelitis (ME) was coined in the 1950s to clarify well-documented outbreaks of disease; however, ME is accompanied by neurologic and muscular signs and has a case definition distinct from that of CFS.” (Centers for Disease Control and Prevention, USA, 2011)

Ever since then, government funded research into M.E. completely stopped, and everything is now poured into the world’s new definition of CFS, or some perceived mixture of both under “ME/CFS.” Because of this, research gets no where, no cause or cure can be found (how could it?), leaving scientists to think it’s all in our heads; sick children are taken from their families and into mental asylum because doctors think this “new version of M.E.” is purely psychological. And fibromyalgia may accompany M.E. just like it may accompany any other illness that damages the nervous system, but it is not ME. Worst of all, the exercise recommended for patients of “Chronic Fatigue Syndrome” and Fibromyalgia can kill or cause permanent damage to those with ME.

We need to get this information out there, but how can we if we’re too sick to be noticed? So please, share this information so more people can have a chance to show up, and let’s try to make a statement. Maybe we’ll make the news.

a rainbow at night

(Post Script: If it’s easier to share an image, download this.)

ME vs. CFS – They’re Not The Same! (via Documenting M.E.)

Brooke hosts this very new blog, intimately sharing her experience as a person with myalgic encephalomyelitis (M.E.) who is currently in hospice care, or, more bluntly put, expected to die from the disease within six months.* That is her current situation, but she is also a person who loves dogs, languages, poetry, nature, and music. Regarding those interests, I feel like I just wrote an explanation about myself! I’ve enjoyed her few new posts ranging from recaps of who she is and has been, facts about the disease, and how hospice care can be of real benefit. I feel she has a valuable perspective and I expect however many entries to follow will continue to be enlightening and authentic. I also admire her idea to start something new when some might raise the idea of it being “too late”–her choice to express herself is testament that we are always, always evolving. In the entry I’ve chosen to reblog here, she explains the huge detriment of calling Myalgic Encephalomyelitis “Chronic Fatigue Syndrome,” the harm it has caused patients, and how that ever came to happen.

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“ME is not CFS. By CFS, I am of course referring to the diagnosis Chronic Fatigue Syndrome. Everywhere you go, you see the two names combined. Many patients themselves abbreviate their illness as ‘MECFS,’ ‘CFS/ME,’ etc. This is incorrect. Doing so hurts literally hundreds of thousands of people around the world. Let me explain.

“Myalgic Encephalomyelitis got its name long ago based on what experts saw in patients with the disorder, as well as the autopsy results of many of these patients. What the autopsies showed was inflammation of the brain and spinal cord, deterioration of the dorsal root ganglia, and more. The name Myalgic Encephalomyelitis means ‘muscle pain and inflammation of the brain and spinal cord.’ It’s a perfect fit. In 1969, the World Health Organization (WHO) recognized this fact and officially classified Myalgic Encephalomyelitis as a neurological disease.

Then the US got involved. In the 1980s, there was a breakout of ME in the Lake Tahoe area. The US sent a couple people to investigate. These individuals refused to meet with any patients, look at blood samples, or do anything productive. … There was not one single experienced ME expert on this panel. Rather than call the illness by the name already recognized by the WHO, the US came up with the name Chronic Fatigue Syndrome. This is where the two names became linked. “Read more

via Documenting M.E.

ETA, Feb 2016: This didn’t happen and Brooke is still with us–not necessarily “fortunately,” if you know what an excruciating disease this is–because the final stages of M.E. do take years, which both her and her doctor were aware of at the time. However, she at least was able to enjoy six months of supremely attentive hospice care, which is more than 99% of people with M.E. ever receive, even though countless need it. Her doctor remains an integral part of her care to this day, including home visits, as she obviously cannot as much as leave her bed, much less her house, to go see one.

Thoughts on Emily Collingridge and Being Judged for Our Disabilities

© a rainbow at night

These two topics complement each other in an unexpected way.

First, the recent death of fellow myalgic encephalomyelitis sufferer (or person with M.E., if you prefer) Emily Collingridge has shaken me, and I’m ready to be honest about why. Usually I would skip this part and post the conclusion of my thoughts, but it’d probably be therapeutic for myself and for those reading (whoever you are) to read a different part of the process.


I have many friends with either M.E. or what is supposedly M.E., that have never known the level of sick that even I have, much less something like what Emily endured in her final years. And that’s good, really! But it’s scary to think that this could be me, because of my susceptibility to this level of sickness. (And goodness knows not anytime soon, because she had the illness twenty-four years and I’m just at ten, but…) It’s not even the death itself, but the way it happens.

Most illnesses so severe will take you out quicker than this. There aren’t many that drag on and on in such a way… Professor Mark Loveless served as Medical Director of HIV/AIDS Programs at Oregon Health Sciences University, and in 1995 he said in his Congressional Briefing that someone with M.E. “feels effectively the same every day as an AIDS patient feels two months before death; the only difference is that the symptoms can go on for never-ending decades.” It broke my heart to hear of her suffering so much, for so long, and, just like Sophia, with her knowing that if she got hospitalized it’d be the worst possible thing to happen… Then sure enough…

I wonder if they’ll have hospice options for people like us in the future.

My “Lymie” friends say that even when they were at their absolute sickest with Lyme disease, they could still listen to music softly or watch television with sunglasses on, and they can’t imagine being that ill and suffering that much, not being able to do anything whatsoever. I can’t imagine it, either. I was only like that for a short amount of time, my symptoms being exacerbated by the trauma of those additional infections, and it just sucks all the happiness out of you; being unable to listen to music, in my case, was particularly difficult. How do you cope with the pain of hearing someone with the same disease as you–your sister or brother in this struggle–enduring that for so long, to be on morphine from so much pain, only to not make it through?

Had she not had the illness for twenty-four years, she likely would have been able to bounce back to a less-afflicted state of sickness as she previously had; as many do, going in and out of the severity levels. When you get it young, like Emily did, like I did (though certainly not as young as six years old), you usually do experience a remission; most, at around four years after the onset. A lot of people stabilize after that. Most stabilize after that, actually, into a moderate or mild affliction. It’s just this 25-30% that get it really, really bad, and it continues to progress over time; almost all the deaths occur from this group.

The thing is, I started this blog with severe M.E.–my condition having been worsened by secondary infections–and I was very privileged a couple of months ago to remove the “severe” classification from my blog description: fromChronicling a very special way of life, that of someone living with severe M.E.,” to “living with M.E.” I remember a year ago, just wanting to be able to brush my teeth whilst standing up. Now I have a chance to get better still than I already have, but if I even so much as look outside, I can’t help but be reminded of all the people who can’t even do that, due to this disease. There’s certainly some degree of survivor’s guilt, here. 

In my day to day life, it’s not often I have to really think of the M.E. anymore, because the things I do to keep it in check are just routine, after all this time. Really, fighting the Lyme disease is my focus and takes up most of my energy, but after hearing of this, it brought me back to the reality that even once I get the Lyme subdued, I’ll still have this terrible, terrible, disease.

My niece, who I live with, has been sick with a viral-induced cough, and I’ve been thinking, at least it’s not the flu (which would hospitalize me) so it wouldn’t be that serious if I did accidentally catch it… But then I remembered that it was a viral ear infection that ultimately made my M.E. relapse five years ago. And it was a viral ear infection that also sent Sophia Mirza into irreversible relapse, all the way to her death. So there really is no such thing as a “better” virus when you have ME. On top of it all, there’s now the paranoia of living with an immunodeficiency disease, and the anxiety of knowing the consequences if I were to catch something so minuscule…

It was a lot of triggers at once.

And it came at a particularly awkward time, after reading an article about a woman with muscular dystrophy who has found a way to enjoy painting, despite the muscle weakness:

“With her condition, most people would just be vegetating, watching TV, enjoying checks from the state. But she does a lot of work. She stays strong.”

I was exasperated with anger.

It’s just another example of how you’re only allowed to be a “worthy” disabled person if you still do things. If you can’t, if you’re really, really sick, then you’re just “vegetating and watching tv and enjoy checks from the state.” Nevermind that we need those “checks from the state” to survive, or that watching television might be the only relief we have from the every day, nonstop suffering…

People don’t want to hear of the severely disabled. They only want to hear of people who are disabled “and yet still.” They don’t want to hear of people who are bedbound to the point of being unable to do anything at all but exist, like so many people I know; like the person I have been and will be again one day; like Emily, when she became too ill to even eat on her own.

I found that article because I was wondering if there were any tricks to navigating muscle weakness that might allow me to still do artwork, besides just taking an excruciating amount of time to complete things. With its similar progressive muscle weakness, muscular dystrophy was the closest thing to myalgic encephalomyelitis I could think of that might have information out there about how to manage it while being an artist.

Then I find an article whose interviewer says that if I can’t do it, if I can’t “and yet still,” I’m just lazy and not strong enough in character!?

It was infuriating, and the reason I wrote about “Media Portrayals of Resilience in Disability and Illness” two years ago. I really don’t take it as a compliment anymore when people say I’m “so strong” because I’m still doing something…

Because what, when my M.E. gets to the point that I can only lie there and breathe, then I don’t matter anymore? Am I still strong if I cannot do? Are we not still worthy? It’s awful being reminded–and now, of all times–that there are people out there who think you, as a human being living with a disability, are inferior, weak, and lazy, for the sole reason that you dare to exist without also inspiring them.

As fellow blogger and severe M.E. sufferer Laurel stated in her post, “In Memory of Emily,” she embodied “strength, spirit and determination–all of which she continued to demonstrate to the very end,” and which was not determined by how much she did.

She did do a lot when she was physically able, even though it took so much out of her. There were causes she thought important enough to spend her very valuable resources on, but when she became unable to continuing doing in her last years, that did not make her any less strong or determined.

I never knew Emily personally, though I was a big fan of her her book for sufferers of severe myalgic encephalomyelitis, and linked to it here several times. It is an indispensable aid to those forced to navigate these unstable waters, one that could have only come from someone who knew its unpredictability and devastation first hand.


In closing, I would ask you to take the time to read Emily’s Appeal, which she wrote over the course of several weeks while she was still able. Additionally, Emily’s story, from her own words, can be found here.

a rainbow at night

Remission from Fibromyalgia?

humboldt redwoods state park
© a rainbow at night

Fibromyalgia (FM, FMS) is a pain syndrome that is usually triggered by a physically stressful event, such as a car crash, surgery, accident, severe infection, or another illness worsening/starting; more or less, it’s the consequence of something else. The pain is primarily in the muscles as well as the tendons that support the joints, lending to severe, widespread pain and joint stiffness, but without actual inflammation. The syndrome does not damage the joints, muscles, or any organs–it just feels like it! There is an extreme sensitivity to pressure (allodynia): Things that would not normally hurt–such as receiving a gentle hug–become extremely and lingeringly painful. The pain never stops, is absolutely everywhere, all the time, and may particularly revolve around the tender point locations necessary for diagnosis.* Someone with fibromyalgia will be hurting when they are sitting, standing, walking, or lying down.

Temporomandibular joint disorder (TMJ) is very common, and a major contributor to headaches. Irritable bowel syndrome is also extremely common. Sleep problems may include an inability to fall asleep, but particularly revolve around problems staying asleep. Someone with fibromyalgia may wake up every single hour at night due to the brain’s inability to conduct normal sleep waves, in this case known as an alpha-wave intrusion, which causes bursts of brain activity during what should otherwise be restorative sleep. Partly because of this, fibromyalgia is accompanied by a great deal of fatigue that may or may not be manageable. Cognitive problems are multiple and very prominent, including things like severely impaired short-term memory, working memory, any ability to recall the names of everyday items, and silly things like placing the television remote in the freezer and the popsicles on the coffee table. (Or pouring your cup of tea into the sink instead of your cup… I may or may not be speaking from personal experience…)

Other symptoms include tingling and numbness of the extremities (your arms and legs), muscle spasms, sensitivity to weather changes (instead of turning on the local news, ask your Local Person with FM if there’s rain or snow coming), and a high rate of restless legs syndrome.

Stress is NOT the cause of fibromyalgia, but stress exacerbates any chronic illness, so proper management of stress is essential to keeping your pain, fatigue, and sleep problems as mild as possible.

Fibromyalgia is not an inflammatory disease. It is also not a progressive disease, though symptoms wax and wane over the course of several months, and can be disabling. If you are experiencing inflammation and/or illness progression, see another doctor for other illness possibilities besides fibromyalgia, which may only be a symptom of another, more serious disease process or underlying infection.


It is known that fibromyalgia can disappear on its own when it’s associated with myalgic encephalomyelitis (ME).** But what about otherwise? Does treating the disease that triggered FM always make the fibromyalgia go away? That certainly wasn’t the case when I fell ill: Although myalgic encephalomyelitis triggered my fibromyalgia, when the M.E. went into remission, the FM remained to torment me…until it, too, slowly abated a year or so later, ironically right as the M.E. returned/relapsed. I expected that additional neurological trauma might reawaken the fibromyalgia, but even throughout the Lyme disease ordeal that followed, the FM never returned (although I am now left with permanent, disabling pain).

So, does fibromyalgia ever naturally remit on its own in other circumstances? We may never know, because the consistent over-diagnosis of fibromyalgia has severely muddied scientific research. For instance, there may be thousands of people diagnosed with FM who also have M.E., who’ve just had the unfortunate circumstance of being diagnosed with fibromyalgia first then stopped looking for additional explanations. Also, nearly everyone I know battling Lyme disease–I am not exaggerating–initially had a diagnosis of either Chronic Fatigue Syndrome, fibromyalgia, or both. It was only their persistent digging that eventually afforded them the actual cause of their progressing pain, fatigue, brainfog, and neurological disturbance. If you do need to be properly evaluated for Lyme disease–and unless you’ve specifically seen a Lyme Literate medical specialist, you probably do–you can read this and call IGeneX to order a test kit for your doctor, as they test for all possible bands (NOT just the most common thirteen available on standard testing). Additionally you may watch Under Our Skin, an excellent documentary film containing people with fibromyalgia (as well as other diseases like Multiple Sclerosis and Parkinson’s) who found out Lyme disease was the cause of their symptoms. (Not in the U.S. or want more help? Click here for resources.)

I don’t claim any of the tips below to be a cure–I think my fibromyalgia most likely remitted naturally of its own accord–but I can at least share how I treated the syndrome while I endured it, in case that might be of help to others. I could always, always tell when I was forgetting one of them.

  1. Magnesium

    You’ve probably read about this all over the internet, right? Sure you have. Well, it’s not just hype. I’m not going to pretend to know the mechanics behind why it helped, but daily supplementation with magnesium not only reduced my Migraine attacks (a condition I was born with) from twice a month to twice a year, but greatly reduced my muscle pain. I’ve read many an article over-analyzing the right “type” of magnesium to take for Fibromyalgia, but I can only tell you this: I bought the plain old Magnesium oxide with chelated Zinc from Walmart and it worked without fail. (I currently use magnesium l-threonate, however.) One important thing to note before you dismiss this one: I’ve always had normal serum magnesium in blood tests. The amount in your blood is not an accurate way to determine the actual amount of magnesium in your body.

  2. Foam mattress topper

    Actually, this might ought to be number one… It’s that important. Fibromyalgia is made worse by pressure on the 18 tender points…which are practically everywhere. It should be easy to grasp, then, why relieving this pressure whilst sleeping is essential to easing your symptoms: You’re pressing on them for eight hours at once! Invest in this, no matter what. You will not regret it. Personally I couldn’t sleep on anything that didn’t have two inches of bed foam for even one night. When I would try to visit friends and family and sleep there, I would awaken after just a couple of hours in excruciating pain, all from the pressure on these tender points. Also, sleeping better will help improve your cognitive abilities (memory and mental functions) and fatigue.

    ♦   For TMJ-related pain and/or head pressure, invest in an amazing pillow. You deserve it, and you need it! It’s all about support and relieving pressure on a body that interprets pressure as pain. I’ve personally been using Simmons Latex Foam Pillow (I cannot stand memory foam) and mine lasted 7 years before needing replacement–you will get your money’s worth!

  3. Protein

    You know what honestly made me start increasing my amount of protein? It was back in the day when Montel Williams still had Sylvia Browne (a world renown psychic) on his show on Wednesdays. Every time someone mentioned having fibromyalgia (which was largely unheard of back then), she’d tell them to eat more protein (and less sugar). I figured, it couldn’t hurt me one bit to try it, so I did. And I’ve been doing it ever since. (I’m not vouching for her abilities one way or the other, but that information helped me. I now also know that people with infections requires 50% more protein in their diet than those without, so that’s another reason for me to continue.) I made a pact with myself to get an adequate source of protein every single day for two weeks to see if it made a difference. Obviously, it did! I noticed I had more energy and wasn’t as weak. I highly recommend you try the same test.

    ♦   For me, it was chicken, and luckily there are hundreds of ways to prepare it so I didn’t get bored. For vegetarians or vegans it might be soy, or something similarly protein-rich that contains all essential amino acids but without soy, like this delicious chocolate protein shake that I also use.

    ♦   We all know too much sugar is bad for us. I switched to honey instead of sugar in my coffee, and cut down on my intake of white-flour, empty-calorie foods (which admittedly wasn’t very difficult since I didn’t eat a lot of that stuff to begin with). Honey is structurally different from sugar, containing mostly fructose and glucose (instead of sucrose), which is fancy language for: Your body can use more of it for energy instead of donating it to your fat reserves.

  4. Aloe vera

    If I had a dime for every person who told me “thank you” for telling them about this one! Fibromyalgia is, without fail, associated with some degree of irritable bowel syndrome; if ever a case existed without IBS, I’ve never heard of it. This stuff will help if your digestion is too slow or too fast (and many IBS sufferers cycle back and forth between loose and hard stools, sometimes even within the same day). I’ve had people tell me they’ve been able to start eating foods they previously couldn’t touch! Hopefully, if you try this, you’ll have the same reaction.

       ♦   I can’t stomach the drinkable form so I’ve been taking them daily in capsules for eleven years. While aloe vera has many other health benefits, it’s mostly to protect the intestinal tract and help keep things from acting out, whether to one extreme or the other. Note that it’s very important to consume the inner aloe vera leaf gel, not just ground up aloe vera leaf like you may accidentally purchase if you’re not paying attention…or having a healthy dose of brain fog. You can get the same relief from drinking it, but these aloe vera juice softgels are much simpler, if you ask me.

  5. Flexeril

    This is a muscle relaxant that used to be one of the only things your doctor could give you for Fibromyalgia, before Lyrica and all the others came around. People with fibromyalgia do not enter the restorative stage of sleep as often as they need, so the next best thing is to make it count whenever you do. Flexeril makes it to where your muscles relax during those rare restorative sleep stages, allowing your body to heal more than if you hadn’t taken anything. The difference is noticeable, particularly when you’re in one of those “waking up every hour” phases that leave you a zombie during the day (which contributes substantially to the “fibro fog” part of the illness). If sleeping aids cannot keep you from from awakening fifty times a night, at least you’ll get the most rest out of whatever REM sleep you do get. I personally had to switch to Robaxin (methocarbamol, another muscle relaxant), but just be sure to try something.

       ♦   Update, December 8, 2015: Flexeril: An Under-appreciated Treatment for Fibromyalgia Pain, Sleep Problems and Daytime Fatigue by Dr. Richard Podell

  6. Exercise daily

    If you’ve made it this far down the list, I hope you’ll stick with me through this section! I cannot stress enough how essential exercise is for fibromyalgia…nor how difficult it is to get started. But second to none does it improve fatigue and stamina, and second only to perhaps the mattress topper did it so quickly improve my pain. I.e., it helps a lot...and you probably want to start with all the others first (except the aloe vera, which is just for intestinal troubles), to give your body the best chance of recovering from the exercise. I could always feel my symptoms worsen when I hadn’t exercised for a day or two. The type of exercise I’m talking about is, for all intents and purposes, graded exercise therapy. This is the type of exercise that studies claim helps chronic fatigue syndrome, but do not mistake this for being a treatment for M.E. (which is not the same as CFS). I absolutely could not exercise until the M.E. began to go into remission. Only then was I able to very slowly start doing exercise, gradually adding on more and more activity.

    The first goal is to have fifteen minutes of activity a day. In the beginning I could only walk around my house for three minutes at a time, five times a day. Next, I moved up to five minutes at a time, but just three times a day, so still fifteen minutes total but more activity at once. When I felt comfortable with that level of activity, every morning I began rotating my joints across their range of motion; it was practically the only way I could fight the terrible morning stiffness, especially in the colder months. Feeling less stiff, I finally started adding in very gentle stretching exercises, similar to the ones you’d do before a run. First, just five minutes a day of very slow stretching, only as far as my muscles could go without feeling a strain. Eventually I was able to work this up to a full fifteen minutes straight of stretching, using my favourite music to make it more enjoyable.

    DO NOT try to do it all at once and DO NOT force yourself to exercise like a completely able-bodied person would. Right now you have an illness to manage. Just because you can’t do things the way you used to, doesn’t mean you can’t do them at all–you just have to do it differently, and that is okay.

    Even with this graded approach, it was still unbelievably painful. The first two weeks will be absolute hell. Probably not the best motivation, I know, but I want you to be prepared. Plan in advance to take care of yourself extra well. With fibromyalgia, you can’t stop just because it hurts the next day: If you do, it’s the same as stopping a new medicine, and you will lose whatever progress your body has accomplished. When I started this, I was exhausted and beyond sore the next day, then more-so the next day, then even more-so the day after that and so forth…until the breakthrough happened. “The pain stage” finally passed, I started to reap the benefits of my exquisitely difficult labor, and from then on? My symptoms were actually worse if I didn’t exercise! There *is* a light after the tunnel. I wouldn’t recommend this for any other reason.

    • Important: This is the exact opposite of treating myalgic encephalomyelitis, and part of the biggest proof that M.E., CFS, and FM are not the same entities. If your muscles begin to slow down the next day and are accompanied by burning muscle pain only upon movement, and these symptoms become worse every additional day until you are experiencing paralysis, you have more going on than “just” Fibromyalgia. If you’re suspected of the viral-induced neuromuscular disease myalgic encephalomyelitis, exercise will only cause symptom progression and irreparable damage, so STOP immediately. Other illnesses that cause different types of progressive muscle weakness in response to exertion are: Lyme disease, babesiosis, chronic viral infections such as CMV, EBV, and HHV-6, hyperthyroidism, and myasthenia gravis (which also results in paralysis). However, this is NOT AT ALL the same as experiencing more pain, more soreness, and more fatigue like you would with Fibromyalgia, because let me restate the obvious: You are going to hurt, be more exhausted, and not want to continue. But I can also tell you on behalf of myself and everyone else who’s ever successfully initiated an exercise routine with Fibromyalgia: It will help you.
    • ETA: I thought this much was obvious, but just in case: Please work closely with your doctor while attempting an exercise regimen so you don’t hurt yourself and so they can do any further testing that might be required based upon your response to exertion. These days you may even be able to find rehabilitation services specifically designed for fibromyalgia.

Am I cured forever? Maybe. I have days where something strange will happen–a herx while treating Lyme disease, a day of severe stress, a strong storm passing through–where I will get a rush of pain that feels just like fibromyalgia, and this leads me to think maybe the mechanisms behind it are not actually gone as much as they’re just not currently active… But I no longer suffer from its trademark symptoms. I no longer have a dull, gnawing, all-encompassing ache in my entire body that never quits and doesn’t respond to any painkiller, that makes it difficult to move any joint from the stiffness, that makes it impossible to sit or stand in one place too long because of the pressure causing a flare around the tender points; I no longer have irritable bowel syndrome; I no longer wake up 10-20 times per night; and I no longer have the specific sleep-deprivation-like brain fog that accompanies it.

Granted, I am still very much disabled, in constant pain, and live with cognitive impairments that sometimes make forming a sentence impossible…along with dozens of other symptoms. But at least it’s not fibromyalgia. I can only keep hoping that it never gets re-triggered, especially since there is practically no information out there about the recurrence of fibromyalgia-like pain syndromes in myalgic encephalomyelitis… But I have the feeling, with all I’ve been through the past eight years, if it were going to reappear wouldn’t it have already done so?

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* Well, not anymore. The criteria for being diagnosed with FM no longer require you to have any tender points. Wow.
** You can read The Nightingale Research Foundation Definition of Myalgic Encephalomyelitis (M.E.) to read about the various pain syndromes that accompany the disease; an FM syndrome is known to occur then slowly abate after several years, which is what happened to me, even though I still experience severe, incapacitating pain as a result of M.E. + damage from neuroborreliosis.

Starting Treatment for Late Stage Lyme Disease (Neuroborreliosis)

As most of my readers may know, I contracted Lyme disease in 2006 from an infected tick. It had crawled onto my scalp, and had a family member not seen it, I may have never known I’d been bitten. I’d always heard “there’s no Lyme in the South” so I didn’t think anything of it, but fast forward to 2009 and a Western Blot revealed possible exposure. Once the disease has advanced to the late stages, the bacteria hide in your organs and usually evade blood tests as well as the immune system, which is why regular labs didn’t yield results. Further testing via IGeneX, a specialty lab, gave confirmation.

The infection has spread many places due to my late diagnosis, but has attacked my nervous system in particular (neuroborreliosis) because Borrelia species really, really love the brain. The disease affects me–and many others in this situation–in ways similar to multiple sclerosis.

Late stage neuropsychiatric Lyme disease can best be conceptualized as a disseminated and progressive, (predominately sub-cortical), encephalopathy. Animal studies and autopsies have contributed to our understanding of the disease process. (25,26,27,28). As symptoms progress, additional symptoms occur and increase in severity.

These symptoms may be categorized in the following manner:

  1. Brain Stem
    • Cranial Nerve symptoms
    • Autonomic symptoms. Dysautonomia may be the result of involvement of brain stem, involvement of other parts of the autonomic nervous system, or end organ pathology – i.e.: migraine, temperature dysregulation, sexual dysfunction, bright light sensitivity, mitral valve prolapse, irregular pulse, neutrally mediated hypotension, asthma, non-ulcerative dyspepsia, irritable bowel, and irritable bladder
    • Hormonal symptoms: From the result of either hypothalamus or end organ involvement, i.e., thyroid disease, HPA axis dysregulation, decline of sex hormone functioning, hypoglycemia
    • Long track disconnection syndromes (very late in the progression of the disease)
    • Cerebellar symptoms
  2. Limbic system, greater limbic system, extended amygdala
    • Altered attention, emotional, and behavioral modulation
    • Pathological psychiatric syndromes
  3. Cortical (May be from either cortical or sub-cortical nuclei involvement)
    • Signature syndromes
    • Processing difficulties
  4. Peripheral Neuropathy”
The Neuropsychiatric Assessment of Lyme Disease, Robert Bransfield, M.D.

It is highly unlikely I will ever get rid of this disease, but today, I’ve begun the battle to keep whatever health I can.

My insurance is still trying to cover Tindamax, so until then (hopefully next next) I am on Flagyl. I took my first dose today, and I’m doing okay! The neuropathy I’ve experienced just being off my bartonella meds for one week (which were the only thing keeping the Lyme disease subdued enough so that it wouldn’t take over) is amazing. This disease truly is frightening, and I’m so glad to finally be on something to stop its progression!

[Update: January 1, 2013 – Edited some of the above because, well, things didn’t go as planned…]

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Possibly the Best Video About Myalgic Encephalomyelitis (M.E.) I’ve Ever Seen


M.E. is Real: The True Facts Doctors and Journalists Need to Know

Told by a person with M.E., it’s very to-the-point and highly, highly worth sharing with all your friends and family, particularly those who might not understand the gravity of what you’re going through. You can watch it above, or (and preferably), click here to watch it at Get Well From ME and/or read a transcript of the video.

“People with M.E. are more likely to die younger, including from heart, kidney, and neurodegenerative diseases, and cancer. More people with M.E. commit suicide, often because they are not offered the hope and support they desperately need, but are instead often maligned by medics, the media, and society, as malingerers or “not really ill,” when they are desperately ill and may often be literally bedbound for many years. Lynn Gilderdale was severely ill with M.E. since she was fourteen, and in her thirties she took her own life. Before she died, Daily Mail journalist Gill Swain saw her, and said afterwards:

‘I had seen African children suffering from starvation;
met people dying of AIDS;
patients paralyzed from the neck down;
others in the last stages of terminal cancer.
But I had never seen a living person as desperately ill as Lynn.’

Why I Think the New Myalgic Encephalomyelitis International Consensus Criteria are Not Much Better

I’m not one of those people who tries to find something wrong with everything. I just wanted one thing, and I didn’t find it.

First, none of this will make sense if you don’t understand this fact: Chronic Fatigue Syndrome (CFS) and Myalgic Encephalomyelitis (M.E.) are two distinct entities. If you look on my site’s sidebar, you’ll find this, which I’ll repost:

“Various terms are often used interchangeably with CFS. CFS is the preferred term because it has an internationally accepted case definition that is used in research and clinical settings.

The name chronic fatigue and immune dysfunction syndrome (CFIDS) was introduced soon after CFS was defined; there is no case definition for CFIDS, and the name implies an understanding about the pathophysiology of CFS that does not currently exist.

Chronic active Epstein-Barr virus (EBV) infection (chronic mononucleosis) was thought to be the cause of CFS during the 1980s, and this association is now known to be rare.

However, post-infection fatigue syndromes have been associated with EBV and other infectious agents. The name myalgic encephalomyelitis (ME) was coined in the 1950s to clarify well-documented outbreaks of disease; however, ME is accompanied by neurologic and muscular signs and has a case definition distinct from that of CFS.” (United States Centers for Disease Control and Prevention, 2010)

This brings us two points:

  1. CFS has an internationally accepted case definition. This definition is based upon the symptom of fatigue without a known cause. All other neuroimmune symptoms are secondary and non-essential for diagnosis. So, if you have unexplained fatigue with sore throat and lymph nodes, headache, and post-exertional exhaustion, while another person has unexplained fatigue with poor sleep and memory, with muscle and joint pain, you both have the same illness as far as “CFS” is concerned, despite fatigue being the only thing you have in common.
  2. Myalgic encephalomyelitis also has a distinct case definition, accompanied by neurologic and muscular signs, and distinct from that of CFS. The best definition for M.E. is Ramsay’s definition, which describes the key feature being “muscle fatigability, whereby, even after a minor degree of physical effort, three, four or five days, or longer elapse before full muscle power is restored and constitutes the sheet anchor of diagnosis.” He goes on to write, “Without it, I would be unwilling to diagnose a patient as suffering from ME, but it is most important to stress the fact that cases of ME of mild or even moderate severity may have normal muscle power in a remission. In such cases, tests for muscle power should be repeated after exercise” (Ramsay, A. [1988]. Myalgic encephalomyelitis and postviral fatigue states: The saga of Royal Free Disease. [2nd ed.]. London).

After several outbreaks of what was undoubtedly M.E., the CDC did a mediocre investigation (if you can call sending one person to collect a few blood samples then announcing “mass hysteria” an investigation) and invented this “new” syndrome of chronic fatigue. Over the past 30 years, it’s become a catch-all group for anyone suffering from fatigue for which no cause can be found, which includes anyone with undiagnosed cancer, hypothyroidism, depression, Lyme disease, myalgic encephalomyelitis, and various other physical and psychiatric disorders that have chronic fatigue as a symptom. The only thing any of these people have in common, is that they are very tired, and are very sick; some of them are dying due to misdiagnosis.

“In a study of the Reeves empirical criteria [for CFS], Jason et al. reported that 38% of patients diagnosed with Major Depressive Disorder were misclassified as having CFS and only 10% of patients identified as having CFS actually had ME” (Jason, L., Najar, N., Porter, N., & Reh, C. [2009]. Evaluating the Centers for Disease Control’s Empirical Chronic Fatigue Syndrome Case Definition. Journal of Disability Policy Studies, 20[2], 93-100. doi:10.1177/1044207308325995).

Needless to say, it’s a very, very poor category to fall into when you’re sick and trying to cling to life. I’ll leave the conspiracy theories out of this, though nearly everyone has an opinion about how it came to happen that a deadly neuroimmune disease got classified as the same thing as a syndrome with “general unwellness and fatigue” as the main symptom. There’s much debate over if other pathogens can trigger M.E., but it’s usually described as having a viral onset and is classified as such by the World Health Organization under “post-viral fatigue syndrome”; it is known to be contagious in the beginning stages. Cort Johnson wrote that Dr. Byron Hyde, a world authority on M.E. and contributor to the ICC, mentioned having “reports of over sixty” M.E. outbreaks from just 1988 to 2003, which were “no longer figured in the literature” and “were not given any mention in the ICC”. Additionally, these criteria have completely left out the main symptom, which is an abnormally delayed muscle recovery after doing trivial things.

The core symptom of M.E. is in the muscles. How is this new international definition any better, if this main symptom is not the focus?

I strongly believe people with chronic Lyme disease are still going to be misdiagnosed with this new definition, which still focuses on “physical and/or cognitive fatiguability in response to exertion.” It includes “neuroimmune exhaustion,” now, but did you know that Lyme disease also causes an immune system dysfunction 24-48 hours after activity? “…[T-cell function] will depress for 12 to 24+ hours after exercise, but then rebound” (Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick Borne Illnesses, Joseph J. Burrascano Jr, MD. September 2008). I’d imagine other chronic infections can do this, too.

In this new paper, they source the recent CFS study about spinal proteins which claims to distinguish CFS patients from “Post-treatment Lyme disease,” but the fact that they are even mentioning the phrase “Post-treatment Lyme disease” is horrifying, as such a category doesn’t exist: Ongoing infection–which has been proven--is the cause of so-called “post treatment” Lyme symptoms, and to not acknowledge this represents a greatly detrimental misunderstanding on their part, and to their efforts. You cannot afford to not understand something that shares so many symptoms with the disease you are studying. Also:

How can you possibly quote a study that uses the same flawed definition of CFS you’re trying to protest, as a support for your paper?? That is a circular argument, and completely unsound.

Thanks to a link at THE NICEGUIDELINES BLOG, I’ve been able to view the full paper that was ultimately published in the Journal of Internal Medicine. I recommend you visit there and read the paper for yourself, but here is the proposed new definition, via photo:

(ETA: Click here for link to paper/proposed criteria.)

All of that said, I really do think this new definition is a huge step in the right direction. We’ve all been begging for a new definition for years. I’m a big fan of the Nightingale definition, but it’s not commonly used. I believe the Canadian Consensus Criteria were developed in 2002? It’s been almost a decade since we’ve seen any new definition, and if it had to be anything, I’d surely choose this one over the mockery of “CFS/ME” definitions that exist in other countries, and “CFS” definition we have here in the United States. It will help eliminate some of the other misdiagnoses, especially of psychiatric origin. If this becomes the new “CFS,” it will make sense to use terms like “CFS/ME” and “ME/CFS”; while, as of right now, that makes as much sense as saying “lung cancer/chronic cough sydnrome” or “HIV/chronic sinus infections.” In other words, none at all, and it’s extremely offensive to those who have it.

At least the definition does focus more on the rapid loss of energy that occurs, physically, which does include the muscles… I just highly, highly dislike the “and/or cognitive fatiguability” part, which means you can still be included even if you don’t experience rapid muscle fatigue. Your brain experiencing cognitive dysfunction in response to continued use isn’t the same as your muscles becoming weakened and eventually paralyzed with continued use.

I don’t know of many chronic illnesses in which you wouldn’t become more exhausted and ill after strenuous mental activity. But there isn’t a single other disease entity with the specific pattern of muscle fatigue exhibited by people with myalgic encephalomyelitis.

In addition to the obvious overlap with Lyme disease: In my own family I have people with ill-defined chronic disease who become extremely mentally fatigued as the evening wears on, and if someone used these new international criteria, they would qualify as having M.E. (or this new term of “atypical M.E”) despite absolutely not actually having it. I see first-hand where these criteria will be a problem in the future. But it’s at least a step, right? Comments are welcome.

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Article: “XMRV: A Human Retrovirus with Unknown Pathogenic Potential, Not a Lab Contaminate”

The Whittemore Peterson Institute has issued a statement concerning the claims about XMRV simply being a lab contaminate:

January 1, 2010

The recent proclamation that “XMRV is not the cause of CFS,” came from an individual who did laboratory experiments to show how PCR experiments can become contaminated. These results have nothing to do with the reality of a disease or the methods used by those who have detected XMRV in the blood and tissue of patients found to be infected. …

Most significantly, the recent Retrovirology publications failed to address the most important pieces of scientific evidence of human infection in the previous XMRV studies, including the fact that XMRV positive patients produce human antibodies to gamma retroviruses, XMRV integrates into human tissues, and infectious virus has been cultured from the blood of hundreds of patients with a diagnosis of Chronic Fatigue Syndrome and M.E. Humans do not make antibody responses to mouse DNA sequences from contaminated lab experiments. The Retrovirology studies only point out that XMRV research cannot be done in a mouse laboratory without extreme caution and should not rely solely on PCR methods.

Source: http://wpinstitute.org/news/docs/WPI_XMRV_010111.pdf

And this is why I adore this facility: They were aware from the beginning how much various interest groups and the media would try to downplay this virus and its significance. They’ve had to issue at least three statements (that I can think of at the moment) to combat the controversial (and false) statements made by various government and media sources. But they don’t back down. They continue to fight for us, knowing that most of us are too ill to fight back all on our own. And for that, we are all grateful.

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Response to Article: Very few M.E. sufferers recover

By: Dr John H Greensmith, ME Free For All.org

“The reason I am absolutely certain that Yvette Cooper’s Consultant cannot reliably say that 90% of people with Myalgic Encephalomyelitis make a full recovery is that no one in the world knows how many people have M.E. The shocking reality is that there has never been an agreed figure for M.E. sufferers. It follows, therefore, that no one could say how any percentage fares at all. This doesn’t seem to stop people from doing so.”

Well I wouldn’t agree completely with that. It’s a general consensus in the M.E. world that about 25% are severely affected, while the category referred to as “most” actually teeter in and out of various categories.

Any estimates of the hybrid ‘Chronic Fatigue Syndrome/Myalgic Encephalomyelitis’ (CFS/ME), which is a fudged collective diagnostic term for several conditions with chronic fatigue (which M.E. sufferers do not routinely have), [and excludes] cardinal symptoms which M.E sufferers do have, makes matters worse… Experimental research samples, from which conclusions are [extended] to M.E. sufferers, may not have contained [even] a single person with this dreadfully debilitating neurological condition, which is being denied its own identity. Yet this is how too many doctors and researchers, who ought to know better from school level statistics, persist in proceeding.”

“It is not always certain that people said to have had M.E. did actually have it but, for example, may have had a particularly severe infection of Epstein-Barr Virus (Glandular Fever), which can take 2-3 years to get over. Yvette Cooper may have been among these.”

It’s nice finding doctors that still fight for this distinction, thus understand why today’s research is so construed. By the way, this was in response to Yvette Cooper’s statement in this article.

“It wasn’t a consideration. I was off work for a year with it, then worked part-time for another two years so it did take a long time to recover. But my consultant did say that over 90% [of ME patients] made a full recovery, and it never came back. It’s one of those things you hope people suffering from it now will realise.

. . .

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FINALLY! American Red Cross bans CFS patients from blood donation indefinitely

It’s about time!

“The American Red Cross announced Friday that it is barring people with chronic fatigue syndrome from donating blood to reduce the risk of transmitting a virus that has been associated with the disease.

The virus is known as xenotropic murine leukemia virus-related virus or XMRV. Some studies have found that people with chronic fatigue syndrome are more likely to carry the virus. But it remains far from clear whether the virus causes the disease.

Nevertheless, the Red Cross decided to bar people with the syndrome from donating “in the interest of patient and donor safety,” according to an announcement from the organization.”

Source: Red Cross bars chronic fatigue patients from donating blood

See also: American Red Cross Statement on XMRV and Chronic Fatigue Syndrome


Completely unrelated, but: Today I got an “official” diagnosis of ocular migraines. Thanks for that, Lyme disease. On the plus side, no consistent vasculitis in my eyes, and my vision is the same level of impaired that it’s been since I was.. wow, twelve! This is ironic, because in the waiting room I had trouble reading the paperwork, a recent development; how transient these symptoms can be!

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We did it! Another CFS and Fibromyalgia patient actually suffering from Lyme disease

We helped another person find out she has Lyme after a decade of being sick and misdiagnosed with “CFS” and Fibromyalgia. But she also has a ton of mental symptoms, anxiety, depression, disassociation, etc…. Something wasn’t right, and we’ve been trying for months to get her to understand that she needed better testing. The stars finally aligned, and she’s getting treatment now!

This is such a great feeling. I’m so blessed to be a part of it in any way… Another person who doesn’t have to think they are crazy! And another person who can be an example for others. ♥ Praise God.

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