Discussion in 'General ME/CFS News' started by Ember, May 16, 2012.
I liked that, too.
Exercise limitations are clearly spelled out in the ME/CFS Definition and Guidelines (An Overviewof the Canadian Consensus Document): http://www.mecfsassist.org/mecfs-overview-of-canadian-consensus-document.html. That 2005 publication includes a chart, indicating “some of the documented dysfunctional reactions to exercise that patients may exhibit” (p. 4).
The ME/CFS Guidelines warn uneqivocally against CBT, and they caution too against externally-paced Graded Exercise Programs (all emphasis original):
The Guidelines state that, to optimize functional ability, the patient should be assisted in “setting personal, emotional, and activity boundaries in which s/he can be as active as possible without aggravating symptoms” and then encouraged to “gradually extend boundaries at his/her own pace, and as able:”
A good understanding of autonomous pacing is given in the Guidelines' "Self-Help Strategies" section, where to educate patients is to
The section on "Self-Powered Exercise" warns that “as much care must be taken in prescribing exercise as prescribing medication to ME/CFS patients. Exercise must be individualized, entered into cautiously, and monitored diligently.” Self-powered exercise is embedded within medical management (to be optimized first) with the proviso that “some patients may only be able to exercise in bed, but exercise is not recommended for all patients.” To minimize relapses, “Exercises must be very gentle and carefully paced” (p.12).
In the ME/CFS Primer, pacing is less strictly defined:
Both documents suggest exercise time-limits and rest periods, but the Primer tempers its criticism of CBT and graded activity programs for ME/CFS patients:
Unlike the Guidelines that warn, “All rehabilitation personnel must be knowledgeable about ME/CFS,”(p. 10), the Primer suggests that “consultation with rehabilitation professionals knowledgeable about ME/CFS may also be desirable” (p, 21).
The Primer states that the “clinical care of ME/CFS involves treating symptoms and guiding patient self-management. The goal is symptom reduction and quality of life improvement based on a collaborative therapeutic relationship” (p. 18). At issue is whether or not clinical practitioners reading the Primer will be fully alert to the dangers that exercise can present for their patients.
Just watching the HHS live feed. The discussion on the primer is fascinating. I good example of how government functionaries causing more problems than they cure. It is looking like the bureaucracy has killed this being quickly adopted and distributed. "To go on our web site or CDC would be problematic." It can't be adopted or recommended because it would be stepping on CDC territory. Very frustrating! How many more people need to get sick before they can "get er done!" I have a feeling if they or their loved ones were suffering and unable to find a knowledgeable doctor, they would be willing to get the info out as soon as possible to every primary care providers. Just imagine if we are struck by a new immediately deadly virus. We'd all be dead before the doctors would know how to diagnose and treat it.
I don't want to defend the CDC but US government agencies have to operate within the rules, regulations and laws that limit their options. What CFSAC has done is support the motion that an appropriate agency representative (I forget the exact wording) work with the IACFSME to make the primer widely available, especially to primary care providers.
These are legal restrictions.
The first thing that needs to happen though is that the CDC toolkit for CFS is so poor that it needs to be removed. Its not acceptable to leave it out there.
Even as I write this, with the HHS feed in the background, this is still being discussed, yet again. The committee is currently recommending the toolkit be removed.
I understand that there are rules. But after all the moving first-hand testimony I expected a bit more empathy from officialdom to get the ball rolling a lot faster. I just did not get an impression from their tone and body language that they understand the urgency those of us who are ill have with regards to the government and medical establishment to recognize the seriousness of ME/CFS and start doing a lot more about it.
By the way, the lady who gave a testimony at the end talked about getting ME in 19985 with a number of people who contracted it at the same time. She also referred to an outbreak in China which see said was undocumented. It has been documented. It is called the Zhi Fang Epidemic. Here is the report http://www.consil.co.uk/downloads/The-Search-for-A-Retrovirus-in-ME-CFS-A-Review.pdf from the UK which documents it.
The ME/CFS Primer uses the CCC. But when it comes to case definitions, we heard today that the CDC may need up to 18 months to collect its data on case definitions, up to 18 more months to get to the point where consensus-building can begin. Didn't we hear at the last CFSAC meeting that their data collection could take up to a year? The CDC blames the clinicians for their slow progress. But a larger group of clinicians committed to producing the ME-ICC using a Delphi-type process:
Some members of CFSAC seem determined to reinvent not only the wheel, but also the very process of inventing wheels. I was surprised to hear them agree to find out how it all happened so quickly in the case of AIDS.
When i highlight it (i too are using the dark/black background), the writing then goes white against the black background, so then is the same as the other posts
It's frustrating to me that there is never any decision-making power in the room. Couldn't they send someone in for 20 minutes at the end who had the power to discuss whatever Lee says is "way, way above my pay grade"?
I had the same reaction -- why are they re-inventing the wheel? The experienced doctors they want to bring together have already come together to produce the ICC. Why do we have to wait 18 months for the CDC to start doing the same thing badly?
Many of the committee members (especially the chair) seemed not to realize they were talking in circles. We can't gather a massive group of doctors with experience in the illness to write the case definition until they're educated in what this illness is, and we can't tell them what this illness is until we have a case definition.
I'm pleased with a lot of the positivity and commitment the committee members showed, but the part about the case definition had me climbing the walls. I finally turned them off.
I know, right?
According to Dr. Belay, the CDC's CFS Toolkit was designed to fill a vacuum. With the publication of the ME/CFS Primer, he suggested that the CDC might be prepared to take down its Toolkit voluntarily (no need for a recommendation from CFSAC).
With the use of the CCC in the ME/CFS Primer and the publication of the ME-ICC, might the CDC similarly be prepared to take down its Fukuda case-definition were CFSAC to make this recommendation?
As I read it, no they wouldn't because they haven't yet made a better case definition. Apparently the CCC and the ME-ICC count for diddly-squat because they weren't produced by a government agency.
I could be reading Dr Belay wrong, of course.
The CDC does go out of its way though to explain that it doesn't produce case definitions. At the last CFSAC meeting, Dr. Unger said:
Hi SOC, I made the same interpretation as you did. To be acceptable it requires appropriate government oversight. Personally I think the CCC or ICC should be the standard for now, and any agency investigation should be aimed at testing these two head to head. Its been a while since I read anything on Jason's ME definition so I can't comment on it. Bye, Alex
As seems to be the status quo at the CDC with regards to ME/CFS -- the right hand apparently doesn't know what the right hand is doing, much less what the left hand is doing.
I felt a bit blind-sided by the 2nd day chair (and other government officials) insisting that the case definition needs to be created by a professional organization like the American Association of Rheumatologists (or whatever it is) "so that we have buy in." Geez, we don't even have enough doctors who know anything about ME/CFS. A major professional society associated with ME/CFS with thousands of members is many years out still.
And the idea that we should use Primary Care Physicians as a source for a group to create a case definition is laughable -- as is the idea that somehow the PCPs will be the ones to do basic management of ME/CFS patients.
First, the illness is way too complicated, with immune, neurological, and endocrine symptoms as well as multiple chronic infections. PCPs can't handle all that. Second, they sure as hell don't want to manage us. We are far, far too complicated and time-consuming. In my experience, and I think it's a common experience, the PCPs who didn't dismiss me as a head-case told me flat out that I would need to get a specialist because they couldn't handle the illness.
I was empathizing strongly with Dr Fletcher's apparent frustration with the lack of awareness of many committee members about the state of medicine with regards to ME/CFS.
Dr. Belay didn't say that the CDC would post the ME/CFS Primer. He volunteered instead to take back to the CDC the suggestion that they remove the Toolkit now that the Primer is available. He didn't think a CFSAC recommendation would be necessary as the Toolkit had been there to fill a vacuum.
My question was not whether the CDC would post the CCC or ICC, but whether they would similarly remove the Fukuda definition now that the CCC is available in the ME/CFS Primer and the ME-ICC has also been published. CFSAC ran out of time and failed to make any recommendation concerning case definitions.
Of course, Lenny Jason isn't a clinician (or a panel of experts).
As I understand it, and I'm on weak knowledge base here, there needs to be some kind of CDC-accepted definition of the illness so that research is done on a "known" patient group. That's why researchers continue to use Fukuda, even if they then sort the data by CCC and not-CCC. To get the research $$$, you need to use the "established" research definition of the illness. Removing Fukuda without replacing it with something else would create an unacceptable (to the government research bodies) vacuum.
How does the CDC come to "accept" case definitions? For rheumatoid arthritis, the CDC posts:
For fibromyalgia, the CDC refers to a criteria set that
Were those definitions developed with government oversight?
Prompted by the CFSAC discussion, I read the primer online: I think it's very good indeed, and as Krafchick said, almost certainly the best resource out there for GP/PCP education, so it should be pushed heavily. I'll be pointing my GP at it, and maybe there's more that we can all do to publicise it. I guess everyone will have their quibbles with it - I think it's rather light on the immunological side and could do with some expansion on that and some rather stronger statements re: immunology, perhaps informed by Margaret Williams' overview of immunology research in the IiME program - but it's very well-written, just the right length, and a really good overview.
One of many things I'm left wondering about after CFSAC is how we at Phoenix Rising might be able to help out the committee in formulating practical proposals. Clearly a very "real-world" perspective is required here, and the difficult task is to come up with well-written, well-thought-out proposals which can actually be implemented by the people receiving those recommendations. There are all kinds of circular arguments, Catch-22s and chicken-and-egg situations around all this, but there may still be specific recommendations that we could come up with that could actually be implemented. After all, some of the key recommendations at CFSAC actually originated with patients and patient groups: they are a very responsive and open committee in terms of community engagement, so perhaps we should start thinking of ourselves as working with them over the next year in preparation for the next meetings...I suspect if we all get together and formulate some motions/resolutions that could possibly be approved by CFSAC and (most importantly) have a chance of being implemented, and provide them to CFSAC together with supporting documentation, there's a good chance those they could actually be put to the next meeting and adopted.
I gave the ME/CFS Primer to my PCP just 2 weeks ago. She looked at it, gasped audibly, and asked, "Is there a summary page?"
As good as it is (and I have a few reservations about it), it's far longer than most PCPs want to (or have the time to) read -- especially if they think they have only one patient with this not-very-serious illness. At present, I'm letting my ME/CFS specialist manage my illness. When I need my PCP to do something, I'm figuring I'll have to bring in my own copy of the Primer with the relevant passage highlighted to justify my request. I'm certainly not relying on my PCP to read and remember all the info contained in the Primer.
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