Discussion in 'Phoenix Rising Articles' started by Mark, Aug 19, 2013.
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Excellent interview, Gabby - really well-chosen questions.
I particularly liked this from Leigh Reynolds (because I have suggested something similar in the past!):
Patients are our greatest asset in the fight for change. The more that patients stay engaged, educated and involved, the better. Critical to this effort are clear priorities, a cleanly defined path to progress, and speaking in one voice as much as possible. Imagine if in October, at the next CFSAC meeting, instead of putting forth several pages of recommendations, hearing public testimony on all varieties of issue and opinions, covering a multitude of topics; we came forward as one united patient community, articulating two key priorities… Not 4, or 12, or 17. Just two.
Each person speaking could add their own personality, flavor, experience and voice, but the core message would be spoken loudly and clearly. “We are here as ONE patient community, speaking to these TWO top priorities. We bring focus, commitment and passion; we are speaking intelligently, articulately and resolutely. We have put any and all differences aside because we know that we are too few to be divided. We know we are stronger when we act as one.”
I have very mixed feelings about having patient testimony that is about the effects of being ill with ME. I feel that at this point, it should be a given that committee members understand how appalling it is. If they don't, I wonder whether there's a way of informing them that doesn't require patients to phone up/sit there and tell them and yet still gets the message across powerfully, such as a video presentation - perhaps a screening of Voices from the Shadows, or something. It seems to me that that meeting shouldn't need testimony to give committee members an understanding of the illness. If that committee were about MS or cancer, would people with those diseases be expected to call in to explain how horrible the diseases were? I doubt it. I have the greatest respect and admiration for those patients who've given this kind of testimony in the past - I don't think I'd have the emotional strength - but I think that the committee should be well past the point of needing that now. I think we need to move on from that stage and into focused advocacy.
I'd like to see patient after patient after patient slamming home the same agreed two or three points in testimony after testimony - ramming those points home. Doing the prioritisation for the committee, not leaving it up to them.
The difficulty I see is in finding and contacting those patients who have testimony slots - or perhaps forming the agenda and then seeking volunteers to take those slots and push that agenda. But I think it's very, very well worth doing.
Actually, I'd add to my point above about the testimony that if anyone on that committee doesn't realise that ME is a serious disease then I don't know what they're doing there in the first place.
I think we've all seen various committees where committee members have been in tears following some moving testimony about patients' experience of the illness, only to see the committee then proceed to be utterly ineffectual in focusing on priorities and moving things forward. I think it would be more valuable to skip that kind of testimony, take it as read that the committee understand that they have a job to do, and help them do that job.
I thought Dr Friedman's suggestion about a name change was interesting:
At the current time Neuro Endocrine Immune Dysfunction would be my personal choice of new names for ME/CFS.
I've not seen that suggestion before. It seems a good one because it describes the systems affected (and the ones that I think you have to have under the CCC to get a diagnosis) rather than mechanism and it's certainly light-years ahead of 'chronic fatigue syndrome'.
I don't know if there are other NEI disorders that it would need distinguishing from but it seems at least a good basis for a name. It would be good to leave all the ME vs CFS controversy behind, which has been so divisive, and start out with a new name. And then as subgroups are split off they can each be given their own name, according to their own characteristics.
Looks like we mostly disagree Sasha.
Dr. Marshall gave a politician's set of answers that are typical for the chair of this committee. I like the man but he isn't a leader or an organizer. I think the biggest required change is that the committee needs to lead and show some nerve to call out the Dr. Kohs of the world for not supporting the committee and the patients. What are they going to do? Fire you? Cut off the non-existent funding? It seems that to serve on the committee one must drink the "we can only do so much" koolaid and sign in blood to not rock the boat. BS, if you're there for the patients show some passion instead of behaving like you are just glad to be there and that your hands are tied. If you want a show of patient solidarity, breath a little fire.
Drs. Friedman and Levine told it like it is. Same as it ever was.Thank you.
Leigh Reynolds has no right to get preachy with the patients. Until we're not fighting with agencies like the CDC against a dilution of the very definition of the illness and that the kids and the most severely ill are basically ignored, all patients have the right to tell their stories. The CAA had a horrible track record with the CDC and representing the sickest of patients and does have not right to tell us what to say our how to say it. Learn your history Ms. Reynolds. You organization stopped 'advocacy' to do research. Thank goodness. Go read Osler's Web and observe your own organization's unwillingness to even acknowledge criticism in social media.
I agree the trail of tears doesn't necessarily move us ahead but in the short term it's vitally important to keep us from moving backward.
I also believe that the patient orgs and advocates are coming together more than ever but that doesn't mean every patient has to read a script. We have too many issues to be addressed and that need to be kept in front of the committee.
The CCC does require neurological/cognitive manifestations. But neither neuroendocrine nor immune manifestations are required for an ME/CFS diagnosis. An ME/CFS patient need have only one of the two of these: “A patient with ME/CFS will meet the criteria for fatigue, post-exertional malaise and/or fatigue, sleep dysfunction, and pain; have two or more neurological/cognitive manifestations and one or more symptoms from two of the categories of autonomic, neuroendocrine, and immune manifestations; and adhere to item 7.”
It was so much simpler back in 1987.
On top of the abnormalities in CEBV Syndrome, elevated RNase L in the 2'5a synthetase pathway, Cheney and Peterson found a new virus, B cell dysfunction. Low NK cell cytotoxicity and UBO's on MRI scans.
The CDC coined a new syndrome and was going to find out what they meant.
Nowadays I am told that these are only things "found in CFS", as if they are totally optional.
That's weird. The CDC had no intention of changing CEBV Syndrome until they saw this evidence.
We thought they "were" CFS, as they were the reasons why the syndrome was created.
Thanks - it's a while since I looked at the CCC but even though each category may not be necessary in an individual patient, the presence of those categories in the diagnosis make the name reasonable, I think. Not perfect, but a big step up from CFS.
I completely agree that patients have the right to give whatever testimony they want but I think that many patients, if they were aware of an option for a joint advocacy action like this, might choose, in part of their testimony, to call for the same two or three priority actions. That only takes twenty seconds of a five-minute testimony.
I don't think that that committee can go backward. There's no further backwards for it to go. And I do think that part of the problem in moving forward has been the sheer multiplication of issues, which I would agree has been due to a failure of those further up the chain to implement the committee's recommendations in the past. If the patients and the committee keep doing the same thing over and over - same kind of testimony, too many issues - they'll get the same results. Something has to change, and the thing under patients' own control is their testimony. I think that's an opportunity to be grabbed with both hands.
if nk function isnt being used for an ME diagnosis then they arent taking it seriously. Its not the be all in a diagnosis but will go along way and like already mentioned, its been known about for years, theres also other immune tests that could also be used in combination with other tests like L rnase as well as certain cytokine profiles. Alot of these type of tests can help weed out non ME patients that get caught in the net of cfs diagnosis which would help alot more in furthering research. This could also help further research in the non ME illnesses as well instead of having a mixed bag of lollies.
Also whats wrong with the international consesus criteria, maybe tweaked abit but its basically agreed upon by most of the cfs/me gurus that are persuing this illness the most aggressively. I havent read the above fully, im mostly a skim reader, but are they trying to reinvent what the internation consensus criteria have brought out??
Thank you Sasha - It is really the participation and the replies from the committee members that made the article interesting.
I think that it is a great idea to include a joint advocacy action to concentrate on one or two key issues. It is important for us to pool our resources together and make it work for us the best possible and most effective way.
I and I'm sure all ME/CFS stakeholders share your frustrations with the ineffectual way that CFSAC has moved in it's history. I don't believe though that one can put blame on Dr. Marshall. His task is not so much to lead than to direct and chair the meeting. He is not the one who sets the agenda nor is he the one who has the power to fulfill recommendations. My frustrations/anger would be more directed towards the NIH and CDC representatives.
I don't read it as Leigh being preachy to us. She graciously replied to my question as to how patients can best proceed. I feel that she gave an excellent answer and has a unique perspective having worked with different patient groups. It is obvious to me that what we have done so far is not working too well for us and we can use some fresh perspective and advice.
Thanks Sasha. I edited it. Now, how can I make a mistake like that?
Dr. Marshall said:
Dr. Levine said:
It was interesting to hear from doctors' perspectives how they too encounter frustrations with the condescending way this disease is looked at by the medical community at large. This drives home the fact that education of doctors is so important if we are to take care of ME/CFS patients properly.
Dr. Friedman said:
Dr. Friedman has a lot of experience serving on CFSAC. It is an important perspective that he brings to us. I hope that patients and/or family members could make more of an effort to attend the meetings. It does drive a point if one sees a roomful of people there.
"From my viewpoint, the Committee was most effective when large numbers of patients were in the audience at the CFSAC meetings and exhibited some signs of militancy."
I think Ken Friedman has done some great things, but from my viewpoint, unless and until we get large numbers of non-patients* involved we are not really going to get anywhere.
***non-patients ***-- as in family and friends, etc.
For example, Alzheimer's research gets hundreds of millions of dollars a year. It wasn't Alzheimer's patients that did the advocacy. It was mostly family members -- as it is with other illnesses. I heard that from people in key positions on Capitol Hill over 20 years ago.
Edited to add that I was going to write about this yesterday but was too sick and now Neilk posted about it while I was writing the above.
@Roy - You make a very good point. How can we inspire family and/or friends to get involved and why is it not happening like in other illnesses?
The CCC requires besides PEM, neurological/cognitive symptoms and at least one autonomic or immune manifestation. When I think of ME/CFS, I think of the CCC definition since that is the language that they use.
By 1986 it was plain CDC had no intention of altering CEBV Syndrome, of studying it, funding it, or even according it a decent amount of credibility that would have generated more research.
Tens of thousands of people called the CDC for help. None was received.
Numbers of desperate pleas clearly does not inspire any response from the CDC/NIH.
The only thing that made them sit up and take notice was the threat of being exposed for failing to respond to new evidence found by Cheney and Peterson.
Creating a new "research tool" of CFS was the token gesture of deference that this evidence was found.
The moment they maneuvered that evidence into the "inconclusive" category was the exact moment they sat right back down again... and went back to Business-As-Usual.
Nothing less than the discovery of some new illness process which threatens to expose them for malfeasance,
if they were to completely ignore it..... has been known to get their attention.
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