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.
But first, I need to take this chance to say:
Thank you for supporting us in our fundraising, but I no longer stand behind MEAdvocacy.org. If you’ve been following the new Facebook page you’ll notice I mentioned having some surprising news, and this was it. Then, after watching their two-minute video on a local news station which (1) failed to mention “myalgic encephalomyelitis” even once, and (2) made those diagnosed with severe “CFS” appear as if their main disability is fatigue, I had confirmation that I wanted out. I feel they’ve missed multiple opportunities to spread proper knowledge of M.E. as promised. I also disagree with them removing the commenting option on their blog without telling our members where we could go to further communicate with each other. They also archived their original donation page to hide all mention of M.E. and their goals unless you click to specifically see the archived post, which I have a problem with. I had been very hopeful based on their objectives in the beginning, and despite the organization claiming nothing has changed, myself and many others feel deceived and have zero faith in MEAdvocacy.org’s ability to use our money for those original purposes. It’s difficult to imagine a scenario in which this would suddenly turn around. However, I do not regret donating and neither should you–at the time, we thought it was the right decision, and we raised thousands for what we believed in: Look what we can do! I only wish I was in a position to start a group, myself. As for Brooke–who is doing extremely poorly at the moment, I’m sorry to say–you can read her 4-tweet-long public statement here, here, here, then here.
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)
Introduction & History: How did we get here?
What if it were you?
Does “Post Exertional Malaise (PEM)” exist in other diseases?
The IOM Committee Speaks Out
The Problem with M.E.-only Advocacy, and How SEID May Help
Does encephalomyelitis really exist in Myalgic Encephalomyelitis (ME)?
The ICC or CCC as an M.E. definition: Are we promoting bad science?
Why do we advocate?
Some of these might be combined or further segregated as I go along. Using everything I’ve sporadically written over the past month, I’ll compile and post these hopefully, potentially once a week, starting now.
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; pre-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” because physicians did not take the illness seriously), 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.
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