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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Here's something I don't understand. Somehow the discussion centered around the Canadian Consensuses 1 and 2. Dr. Fletcher offered Dr. Klimas's comments on these. What about the ICC. Klimas was an author on this, and according to the introduction section, it improves on the CCC.
I wasn't watching. Was the vote, on ME/CFS experts for the the case definition discussion, public? If so, who voted in which direction? Somebody may not remember them all but eventually a list could be made. (maybe it's not important)
but from my notes, it's not clear what kind of experts is meantDane Cook is the one who proposed adding 'experts' to the wording.
There is a Canadian definition two:I think by Canadian definition #2 they meant the second Carruthers definition, the ICC. That's the only sense I could make from that.
Jason, L.A., Evans, M., Porter, N., Brown, M., Brown, A., Hunnell, J., Anderson, V., Lerch, A., De Meirleir, K., & Friedberg, F. (2010). The development of a revised Canadian Myalgic Encephalomyelitis-Chronic Fatigue Syndrome case definition. American Journal of Biochemistry and Biotechnology 6 (2): 120-135, 2010 ISSN 1553-3468. doi:10.3844/ajbbsp.2010.120.135
Free full text at: http://thescipub.com/abstract/10.3844/ajbbsp.2010.120.135
Thanks.only half the room can be on camera at a time. Vote is by show of hands, so it is public. However the camera did not pan, so it may not be possible to get a complete list without requesting the minutes (they might eventually post to the website?)
Eileen Holder and Mary Ann Fletcher voted yes on experts. That's all I recall for sure at this moment.
Marshall, Unger, and Maier were opposed during the discussion.
Marshall felt that people who thought ME/CFS was not a real disease would not come to a stakeholder meeting. I think this is naive. There are lots of people who think ME/CFS is primarily psychosocial or is psychogenic who would show up at a stakeholder meeting. There's kind of a reason we're engaged in a propaganda war.
Dane Cook is the one who proposed adding 'experts' to the wording.
Well, one difference is that it has different levels, which I like as somebody who for the first few years, was relatively mildly affected but was pacing so didn't have very noticeable ongoing symptoms (but wish I was diagnosed then as I don't believe I would have become severally affected):What is the difference between CCC1 and CCC2?
Meeting research versus clinical criteria: Table 1 provides all the symptoms as specified in the Revised Canadian ME/CFS case definition. Some meet full criteria whereas others who are very symptomatic do not meet full criteria. We argue as we did with the Pediatric case definition (Jason et al., 2006) that those that meet full criteria are more homogenous and might be best used for research purposes and we now classify these individuals as meeting the Research ME/CFS criteria. Still, others might have the illness but not meet one of the required criteria. We classified such individual as meeting Clinical ME/CFS criteria. These individuals needed to have six or more months of fatigue and needed to report symptoms in five out of the six ME/CFS symptom categories (one of which has to be post exertional malaise, as it is critical to this case definition). In addition, for autonomic, neuroendocrine and immune manifestations, adults must have at least one symptom in any of these three categories, as opposed to one symptom from two of the three categories. We also have a category called Atypical ME/CFS, which is defined as six or more months of fatigue, but having two to four ME/CFS symptoms. There is also a category called ME/CFS-Like, which involves exhibiting all criteria categories but for a duration of fewer than 6 months. Further, a person could be classified as having ME/CFS in remission if the person had previously been diagnosed with CFS by a physician but was not currently meeting the Research ME/CFS Criteria, Clinical ME/CFS criteria, or Atypical ME/CFS criteria and must have 0 or 1 classic ME/CFS symptoms.
I think the reasoning was that because we don't have a medical course of study/specialty in ME/CFS, there are no experts. Or something. Yes, more bullshit.
Here's something I don't understand. Somehow the discussion centered around the Canadian Consensuses 1 and 2. Dr. Fletcher offered Dr. Klimas's comments on these. What about the ICC. Klimas was an author on this, and according to the introduction section, it improves on the CCC.
I will continue to applaud patients and advocates that attend and testify at CFSAC, but I don't plan to spend any more time and energy on them. The ex-officios invoke Catch-22 after Catch-22 and would have us believe that no one actually holds any accountability for ME/CFS. Trying to keep up with rebutting their half-baked defenses is like whack-a-mole. A few of the noted CFSAC members are great, but many of the CFSAC members don't seem to realize how completely ineffectual is the CFSAC. And not realizing the nature of their position relative to HHS, the CFSAC cannot think and act strategically. With things as they are, CFSAC is a total or near total waste of our energy, as it is clearly not meant to foster change or able to do so given such intransigence on the part of CDC and NIH. In that respect, I would encourage people to spend less energy on CFSAC and much more on other advocacy efforts that are more likely to bring change, I.e. lobbying your congress people, developing educational materials or videos, writing letters to media personalities and news sources, etc. I know I've personally spent too much precious energy on a body that my intuition tells me will not produce change. We need to find a way to exert real pressure on HHS if we hope to see change.
Yes, I consider that to be the root to many problems.Sounds we are continually screwed by having a multisystem illness in a single system-focused medical world.
Absolutely. I have some pictures in my mind now of circles.Doesn't it sound like a series of vicious circles? We can't get funding because there are not enough proposals, but there's not enough proposals because there's no funding. We can't get a good team of experts evaluating proposals because there's so few researchers that the same people who want to propose research would be the same ones evaluating the research. :thumbdown: But we can't get more researchers into the field if there's no funding.... It just keeps going around and around and around....
About that: http://p-a-n-d-o-r-a.org/ae.phpThe New PANDORA has an advocate training program.
Could we do better? I mean this as a serious question. I'm having a vision of us crowd-sourcing somehow. I'm sorry that my brain doesn't retain information, so I'm forced to talk in generalities. But there are a number of excellent ME and CFS organizations, which are producing quality written material - about diagnostic criteria, current research, good doctors, treatment protocols, etc. What if the best ones pooled information into a meta-website, structured from the get-go as the ME and CFS gateway for information.
It wouldn't be a place for argument or discussion. It would be a repository for what we all DO agree on.
Madie
Could we do better? I mean this as a serious question. I'm having a vision of us crowd-sourcing somehow. I'm sorry that my brain doesn't retain information, so I'm forced to talk in generalities. But there are a number of excellent ME and CFS organizations, which are producing quality written material - about diagnostic criteria, current research, good doctors, treatment protocols, etc. What if the best ones pooled information into a meta-website, structured from the get-go as the ME and CFS gateway for information.
It wouldn't be a place for argument or discussion. It would be a repository for what we all DO agree on.
Madie