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


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14 thoughts on “ME vs. CFS vs. SEID Information & Advocacy Chart

  1. Reblogged this on Documenting M.E. and commented:
    Hey guys – Sorry I’m not well enough to participate in Awareness Day with my own original content, and I know I’m a day late even with this, but I wanted to reblog this excellent post from A Rainbow At Night. Please share these easy to understand graphics full of accurate information on this disease with everyone you know! Thank you, and take care!

    Liked by 1 person

  2. Really well done Rainbow, I love posts like this that convey information in such a visual and quick way. These are the type of creative things that are crucial for getting rid of all this ignorance surrounding such a serious medical contribution.

    Happy May 12th friends,

    It is with great pleasure today that we announce the creation of “Advocating4ME”, a multi-national group of grassroots activists working together to raise funds for the most promising scientific research studies for Myalgic encephalomyelitis anywhere across the world. If possible, I would encourage you to come over and check out what we have planned in the near future smile :)

    https://www.facebook.com/pages/Advocating4ME/1606524889591699

    Like

    1. I’m glad you pointed that out! We need inquisitive minds like yours.

      This is one of the main problems I and even some of the M.E. experts who helped compile the ICC, have with it: How can you create criteria for what has always been an epidemic and endemic post-viral disease–hence the WHO classifying it underneath Post Viral Fatigue Syndromes–and not require a post-viral onset (or any infectious onset)? Cort Johnson wrote of Dr. Byron Hyde 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)…which I find pretty disturbing!

      The ICC also do not explicitly require the muscle fatigue, but set “physical fatigability” as an option tied to “and ⁄ or cognitive fatigability”… I.e., someone can get diagnosed with M.E. using the ICC criteria even if they don’t have the characteristic muscle fatigue and even if they didn’t acquire their illness after an infection of any kind.

      I know several people–even some in my own family!–who would qualify for an ICC-ME diagnosis, who actually have other conditions, misunderstood conditions that doctors might not think to look for or be able to properly diagnose. So while I think the ICC are closer than most of the “new ME” definitions, it still falls short of listing two of the basic requirements…which you’d think would’ve been a higher priority. I think they got mislead by mixed research results, if the slew of “ME/CFS” papers cited as references in the ICC paper are anything to go by.

      Like

      1. So what you are suggesting here is that ICC should be thrown out and Ramsay should be used?

        I would think that would be a controversial position, if so.

        Are there any acknowledged experts out there who have publicly taken this position?

        I personally am not sure whether acute onset should be a requirement for an M.E. diagnosis. That could be something that needs to be discussed in a rigorous way.

        This chart suggests that the matter has already been decided in favor of it needing to be required though. And thus that the ICC is wrong. And thus that the experts who wrote the ICC are wrong.

        I feel uncomfortable with that concept, enough so that I would be hesitant to share this page with others.

        Like

        1. Thank you for your comment, and I absolutely see what you’re saying. It’s hard to conceive that a group of researchers could use all those resources and come up with something that didn’t fully encompass the disease they were trying to study… And yet, look at any of the CFS definitions. Or look at the recent IOM report. In a lot of ways, it’s amazing, but it still leaves out crucial information and in the very end, despite their thousands of research hours, they decided to create yet another category in which ME will get buried–this time, post-exertional malaise (an aspect of many serious illnesses) instead of CFS’s “unexplained fatigue.” The IOM report also mentions there’s not enough evidence for inflammation in “ME/CFS” (which is true, because “ME/CFS” is not one distinct illness and constant inflammation hasn’t been found in those mixed groups), while leaving out that there IS ample historical evidence of inflammation in ME itself. Once we know the history, we have to question when things don’t add up, even if it stems from people we respect.

          As far as the ICC being thrown out, I don’t know if I’d go that far. It might be a stepping stone. But I know it has potential to catch very ill people who do not actually have M.E., just like many of the CFS definitions do, while also not requiring two of the primary features of ME. If you’ll look, many of the references used to support the information in the ICC are actually based on CFS or ME/CFS studies. This is like writing a new definition for multiple sclerosis but using papers on cancer as its support. Whereas the criteria that were used for ME *before CFS was ever invented* were specifically designed around the disease itself, not thrown together out of a mixed group with various misdiagnoses.

          By using the classic criteria (they’re not just from Ramsay; I based the ones above on a collection ME-specific definitions, especially pre-CFS definitions; I can name names when I have more energy to get the refs), we could catch the people who still get classic post-viral M.E., because those people are not being studied, except by accident when we fall into other categories.

          It’s important to remember that the definitions described above *were* ME, but before the category of CFS was ever invented. The resulting confusion from CFS and mixed “ME/CFS” hybrids–these hybrids that some people now accept as the new ME definitions without question, because we’re supposed to be able to trust our leaders–never needed to happen. M.E. already had criteria: The ones in the graphic are those criteria. If you’re curious about the history of ME I might suggest my ongoing series which has two posts in it so far that explain what ME really was pre-CFS/how we got here. (There’s also an upcoming post in which I’ll elaborate on the ICC conundrum.)

          There aren’t many left–unfortunately many of our experts have died–but there ARE still researchers and doctors alike who support a classic M.E. criteria. Here’s the first example I can think of right now because it’s very recent: http://www.tandfonline.com/doi/full/10.1080/21642850.2015.1027705 More can be found in the links above, under the post, if you have the energy, but as for me at this moment–I must rest. I hope I’ve explained things clearly enough.

          Kit

          Liked by 1 person

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