Pay attention, friends and fellow people with M.E., for the first time in a long time I think we–people affected by actual M.E.–have a chance to get something done.
But please note, we especially need help RIGHT NOW, because for the next three days until January 21, 2015, midnight E.S.T., ALL DONATIONS up to $1,000 will be DOUBLED! (see update below)
I wanted to post about this last week, but this disease is so efficient that it kept me from doing so.
Brooke gave me the link to this, and I’m so grateful that even as she lies dying from this disastrous disease, she’s still trying to make it better for the people who will remain. Despite a definitive diagnosis and an admission to hospice on the grounds of myalgic encephalomyelitis, she and her husband (and the few amazing family members helping in her care) get harassed daily because (1) the top organizations that exist for us only advocate for “ME/CFS” and (2) all of their information revolves around CFS, not anything about ME and its potential to be fatal. This has caused 90% of her family and many friends to not only genuinely believe that she’s “choosing” to die, but also that her family and doctors are “helping” her do so by not forcing her into CFS-based “treatment,” because again, the top “ME/CFS” organizations have absolutely zero accurate information about ME. We can do something to change this.
From the 501(c)(3) not-for-profit corporation May12.org, comes a new division, M.E. Advocacy.org, and here’s what they’re doing and how we can all be a part. Please read on to see how you can help people like Brooke, myself, and so many thousands of people with this disease.
The National PR Campaign for Myalgic Encephalomyelitis (M.E.) has begun.
We have hired the public relations (PR) firm, Crowds On Demand, to manage a PR campaign on behalf of ME patients who are too disabled to protest for themselves in an effective way.
We aim to start a national dialogue and get ME and its issues on the radar of the general public, patients, doctors, researchers and our policy makers in Washington, D.C.
“We are asking for ME to be officially recognized as its own distinct disease in the US, along with a true ME definition. Note that this is quite different than simply changing the disease’s name from CFS to ME. We want ME separated from chronic fatigue syndrome (CFS).”
“ME was characterized by Dr. Melvin Ramsay in 1956 to describe a series of epidemics, first appearing at the Los Angeles County Hospital in the 1930’s.
Since 1969, ME has been listed under “Diseases of the Nervous System” in the World Health Organization International Classification of Diseases (WHO ICD), current diagnostic code, G93.3. Wouldn’t it be logical if this were used for ME?
In the US, however, after the famous outbreak of ME at Incline Village, Nevada in the 1980’s, the disease was renamed “chronic fatigue syndrome” by the Centers for Disease Control (CDC). A new ICD code was created under “Symptoms, signs and abnormal clinical and laboratory findings, not elsewhere classified”, currently R53.82.
This caused ME to be confusingly mixed with non-ME diseases, such as depression, in a series of overly broad definitions, culminating in the Fukuda Criteria, still in use today. This was politically motivated, apparently by the influence of disability insurers (Osler’s Web, Hillary Johnson, pp 217 – 219). This is corrupt, unscientific and medically unsound, and not in the best interests of patients.”
“The results have been devastating for ME patients. With a population much larger than the similar and better known neurological disease, multiple sclerosis, most ME patients are undiagnosed. Rates of disability are high – being housebound or bedbound for years or decades is not unusual. There are no FDA approved drugs or treatments. Patients are incorrectly told to exercise, when this is actually harmful. Patients can die 20 years younger than normal…
In 2014, federal research funding for CFS was a measly $5 million, compared to $115 million for the similar disease, multiple sclerosis. This severe underfunding has been occurring for decades.”
“The ICD has variations in each country. In the US, it’s called ICD-CM. … It also has an Exclude1 for CFS (R53.82). The same with CFS – it has an Exclude1 for ME. This means you can’t be diagnosed with both ME and CFS at the same time. ME G93.3 is listed under neurological diseases. CFS R53.82 is listed under Symptoms, Signs and abnormal clinical and laboratory findings, not elsewhere classified. So – the ICD-10-CM officially states that ME and CFS are two separate diseases, classified in two different categories, each mutually exclusive of each other.”
“In the current version, ICD-9-CM, ME is not classified in the tabular listing of diseases, meaning it doesn’t “exist”. I’ve heard of only a handful of ME patients in the US able to get diagnosed with ME. Everyone else has been diagnosed with CFS.”
“Luckily for us, this has been rectified in the ICD-10-CM, which goes into effect Oct. 1 2015. G93.3 (the code for ME), will then be listed in the tabular listing of diseases making it officially “exist” [again]. The timing could not be better. We need to start using it!”
“There is no ICD code for ME/CFS, CFS/ME or CFIDS – only CFS and ME. The NIH’s use of the term ME/CFS is improper. We ask that they stop using this term, and go back to using CFS as the CDC is still doing.”
“The language we use is important, and using the correct language to refer to our disease will help reinforce our campaign. … We encourage everyone in the ME community to follow suit.”
“As we only have the fees covered for the first month, we are currently fundraising for February, with a goal of $4,000 more ($10,000 total) by January 21. An anonymous donor has generously offered a $1,000 matching challenge grant, so the first $1,000 donated will be doubled. Please donate now!”
To donate directly, now, go here: https://meadvocacy.nationbuilder.com/donatepr
“A representative from the PR firm was present at the Congressional Inauguration on our behalf on January 6, 2015, looking for new Congresspersons who might become a champion for ME. We did one-person protests at the NIH and CDC in conjunction with that. We also have an upcoming 60-second radio ad, which will air on Midwestern health podcasts and on various FM/AM radio stations throughout the country.”
What do *I* want, personally? I’d like you to help donate, even if it’s just $1–what if everyone who said “I just don’t think that little amount matters,” still donated?
In just over 24hrs this post has received 400 views, but we definitely haven’t raised that much money–I repeat, even if it’s just $1, it DOES make a difference!
The results from the matching grant rush are in: We collectively raised over $2,000, which means the $1,000 matching grant will be applied for a current total of $3,015 raised since Sunday–you all are AMAZING! The organization now has enough for February, and anything after this will help pay for March. Every. Bit. Matters. And remember, our PR group guarantees results within 6 months, or there will be a 50% refund to re-allocate–it’s a win-win as far as I’m concerned.
If you can’t, then maybe share the link for us, say you know a woman with this disease who just wants some hope of research and maybe a treatment, because we’ve had nothing for almost 60 years.
The worst part is that when people who actually have M.E. are following the current, widespread “CFS” or “ME/CFS” treatment protocol with exercise, it will unequivocally cause disease progression. Exercise is used as a treatment in “CFS,” while the inability of people with M.E. to exercise is part of how we document our disability. Could it be any more different?
♥ a rainbow at night