The thirty-five is now fifty…
Instead of being mollified by the DHHS working document, the effort by ME/CFS experts to rescind the IOM contract to produce a clinical case definition has actually gathered steam. The fifty ME/CFS experts signing the letter now include Dr. Lily Chu, Dr. Kenneth Friedman, Dr. Betsy Keller (exercise physiologist), and Dr. Van Ness and Snell (Workwell) in the U.S., and Dr’s Bested, Fluge, Mella and others from outside the U.S.
With the IOM contract, the DHHS has basically created a template for how not to deal with hot-button topic; first, you choose a particularly controversial subject, then you block a community that’s been burned repeatedly in the past from participating, then you pull back and, out of the blue, move forward again. Throughout the process you keep communication at an absolute minimum. 🙂
Then, perhaps legitimately, but then again, the timing is soooo suspect, you announce that the one upcoming public forum in which this subject could be aired, is now closed; the CFSAC meeting is now going to be a webinar for the first time in its history.
The working document has some good points; the contract includes some sort of ‘study’ (not defined well), a commitment to consensus building (who? how?), a promise to consider new terminology (other than ME/CFS apparently), and then a program to disseminate the information to clinicians. The approach is hopeful – the DHHS was moving in the right direction – but the devils is in the details, and there are precious few of those.
Under this contract you could have, depending on your viewpoint – absymal, adequate or fantastic ME/CFS participation – there’s no way to tell , but it’s clear that the working document does not bake in significant ME/CFS participation. Whether that happens is apparently up to the IOM. On the crucial question of ME/CFS representation in the fifteen panel members that create a new definition, there’s no help.
Pandora’s announcement that ex-DHHS liason Wanda Jones is going to help produce a statement brings in a much trusted figure. Given the intransigence on both sides (DHHS – we’re moving forward), ME/CFS community (cancel the contract!), any person that can bridge the two communities is potentially very helpful.
(Wanda has played this role in the past; when the FDA declined to approve Ampligen and Bob Miller was on a hunger strike, Wanda was brought in to mediate, and here she is again. (She’s probably feeling like Al Pacino in the Godfather Pt III – “Just when I think I’m out, they keep pulling me back in”.)
Trust – the Key Issue
Trust is the key issue; a good clinical definition backed by the federal government and then disseminated to the public would be a huge win. It’s getting there that’s the problem. Fifty ME/CFS experts have just said we believe a) we have a good definition, and b) we certainly don’t trust you to come up with a better one.
A community that’s had a horrible name and two poor definitions foisted upon them by the feds, that knows they’re getting shafted from the federal government on funding, and has been hearing federal officials for years say how very important this disorder is (while nothing significant changes), probably isn’t going to respond well to ‘just trust us’. There’s too much history here. They want details.
This is more than an DHHS trust issue. Asking patients, researchers and doctors to trust the objectivity of the ‘scientific process’; ie to allow outside individuals, most probably with no experience in chronic fatigue syndrome to objectively come up with a good clinical definition of ME/CFS, is a huge stretch given the past definitions produced. Those definitions, which were produced by select groups of ME/CFS experts, remember, prompted the broader community to take it upon itself to produce two definitions of its own. They ensured that the community would not accept processes that were not representative of the broad community.
If the Contract Is Not Repealed – A Middle Road
Ideally, the whole process should be begun again. According to people who know better than me, that’s not going to happen but time will tell. If the contract isn’t repealed, the DHHS surely has the option to redo the contract. ME/CFS experts in collaboration with DHHS officials and IOM representatives should get together and work out a contract that’s is responsive to both the ME/CFS community’s needs to have substantial ME/CFS expert input, and to the DHHS’s desire to have outside input.
The ME/CFS community may have to give up its desire for the CCC being the starting place, and the DHHS would have to give ME/CFS experts more of a say. (If enough ME/CFS experts were on the panel, the CCC would still be the defacto starting point. The DHHS, on the other hand, may be reluctant to begin any process that designates a winner at the outset.) This could produce a definition that’s representative and accepted by both the ME/CFS community and the larger research/doctor community.
If the DHHS does not reopen the contract, it would probably behoove the ME/CFS community to shift its efforts from trying to stop the process to ensuring that it works; i.e., turning those vague promises into significant opportunities for the ME/CFS community to get its views inserted.
One thing that may have been lost is that this is not a research definition, it’s a definition to help doctors know how to describe ME/CFS. Because describing does not suggest a cause or even a treatment pathway, it’s a fairly non-controversial process. With two clinical descriptions already produced by two ME/CFS professional efforts, several video’s by ME/CFS experts produced under the auspices of the CDC, and the FDA’s document describing ME/CFS patients, coming up with a description of what a person with ME/CFS looks like in the doctors office should not be difficult. The working document specifically directs the panel to refer to those descriptions.
However this turns out; a repealed contract, a redone contract or the same contract, the heat generated thus far is going to help. The now fifty experts backing the Canadian Consensus Definition, the CAA’s promise to hold the DHHS’s feet to the fire to ensure ME/CFS experts are involved, PANDORA’s detailed inputs, Jennie Spotila’s razor-like focus on this issue, and the firestorm in the patient community is all going to help.
There are some silver linings. The fact that the federal government is throwing money at ME/CFS is shocking giving the federal governments budgetary restrictions, and we should note that the DHHS did finally respond to an important CFSAC recommendation. If you can push aside how they went about it, these are real positives. If they had done this another way – we might all be cheering.
Dr. Bateman is right; there’s a real opportunity here; let’s not put aside the possibility that this could end up being a real win. The flip side of all this controversy is getting a good, widely disseminated and publicized definition for the first time.
This opens the door to validation, funding and future research based on clear identification of gaps in our knowledge, review of our current evidence base, and creative thinking about how to move forward.
No Blame Game
I don’t think for a minute that Nancy Lee or Dr. Maier or Dr. Koh is out to get ME/CFS. Without having any inside information, my guess is that the DHHS felt they were following CFSAC recommendations, and that they meant well but did poorly.
For the DHHS to flaunt such a large outpouring of expert opinion, however, isn’t workable. Many of these experts have spent their careers working in this disorder. Their experiences and voices need to be heard and responded to. If the DHHS and the experts make a commitment to bride the gaps and move forward, this process can still work and even forge new relationships and new opportunities.
The link to sign up is:
Speaking put on the facts of the IOM is NOT playing the blame game.
We have the GWI Illness travesty and tragedy to see with our very eyes. To think we will do the exact same thing, but get different results, is the definition of crazy, as they say in recovery. But is also politically very naive and needs magical thinking as a foundation.
Please do not paint us in this way. It minimizes and distort not only us, but the seriousness of this issue we are all facing.
I don’t like the way the GWI definition process has gone but it hasn’t played out either. We don’t know how that’s going to turn out. From what I can tell the ME/CFS community is much more up in arms about the IOM contract than the GWS community was.
I don’t know where the magic comes in. I think the two sides should get together, redo the contract and create something that works for everybody.
>From what I can tell the ME/CFS community is much more up in arms about the IOM contract than the GWS community was.
These are US Military Veterans!
They were good soldiers, not just in war, but in doing what you are asking us to do today: follow the chain of command and do your duty. Don’t question. Trust.
Military people are not prone to protesting! As well, how would they have seen that coming? They did not have our vantage point, they did not have an unprecedented (in my 20 years of political organizing and advocacy) support of 35 top experts in the field, let alone 50. Always, the scientists and professionals agree in private, but fear repercussions to their careers (a very real fear), so they really relied on us to get the advocacy done with their behind the scenes support. They helped us with the science, they’d help us with what to ask for…Was that not the same with Act-Up?
I may be wrong, but in that case it was patients and their allies led that fight.
But unlike Act-Up our experts are standing out in front for us, as most of us our too sick to fight. Our trust should be in the letter signers and not the contract signers.
I am not sure what to think about you saying you do not understand the concept of magical thinking.
That is very hard to believe.
It is magical thinking at BEST to try and see what is happening and describe it as you have, and to ask other PMEs to ignore what they see and follow that illusion, is naive at BEST.
It is tragic.
The point is Delia is that, whatever the reason, there is much, much, much more heat being put on the IOM by the ME/CFS community than by the GWS community. For all the talk of the tragic’ GWS process, I had difficulty finding much advocacy done on their behalf at all.
We are not then doing the same thing are we?. We have 50 experts and many advocates (including me) signing multiple letters, there’s a petition, the DHHS has undoubtedly received many emails – PANDORA, the CFIDS Association and others have weighed in.
Nothing even close to that scope that I can tell happened in the GWS community.
>Nothing close to that scope that I can tell ever happened in the GWS community.
Which is exactly why we should remain steadfast and resist efforts, such as you expressed to collaborate. (And if we succeed possibky try help reverse the tragic GWI situation. I have been and still am bedridden by this disease. I was completely unaware of what happened to our Vets)
Before I got too Ill to continue, I was an active grassroots organizer and successful advocate for over 20 years. Among others I was trained by the author of the Americans with Disabilities Act, and Advocate, Bobby Silverstein, among many others.
I have had the great, great fortune to learn from some of the best, longest standing advocates in the United States.
I do not come to this particular political situation naively.
There are times when it is absolutely the best course of action to get on that table, and try to influence the process and decisions.
This is absolutely NOT one of those situations.
This is keeping your seat at the front of the bus time. Until they arrest you if that’s what they wish to do.
Resistance. Positive Resistance. Resolute Resistance.
This is a table we have no power in no matter who gets seated at the table.
Very well said Dalia. As one who is only been sick for less than 4 years and still who has a big learning curve, it is very clear to me that the HHS contract with the IOM is much more about the politics of control than of furthering the science and treatment of ME. We have both the Canadian and International Consensus documents that come from thousands of hours of research and treatment by respected scientists and MDs around the world. There is no rational argument for the HHS to contract with the IOM to come up with a new definition and diagnostic program unless you have political reasons. The ME community has very good reason to distrust the HHS’s motives. At best, this contract will be a complete waste of time and money that could have been better spent elsewhere. At worst it will cause great damage to the promising research and treatments that are evolving now. The most damning will be a loss of hope for many ME patients and we all know that this loss of hope in a ME patient is deadly.
To me, we are either up against ignorance, or malignance.
It makes no sense whatsoever not to follow the experts’ letter.
Imagine the government giving the cancer dossier to an independent group of doctors, none of which are oncologists, and then comes a solid protest by eminent oncologists warning the government that this is a big mistake for the future of cancer science, and yet the government goes on… What would you think of this situation?
I would think they are either negligent and aloof … or evil. The evil scenario: we are actually up against a hidden and powerful insurance companies lobby maneuvering so as to not be stuck with yet another life-long illness to pay for, and the most odd coincidence right now in my view is not the webinar meeting (though yes, why?) but the CDC rejecting the two day CPET which would have been irrefutable stuff in court, quickly followed by the IOM contract… “Let’s do away with evidence that proves the disability, and let’s come up with a watered-down definition of the illness that attenuates it’s true debilitating nature like we did with GWI illness” (maybe Oliver Stone would have liked that scenario, though perhaps still not evil enough to his taste!)
But this is not a movie it is reality, and in reality I guess there are more ignorant people than evil ones. So I would go with the first hypothesis. – Or perhaps a third one, they are both ignorant and malignant.
We’ll see what happens with the experts letter. The best case scenario is that they start the process over. Nobody seems to think that’s very likely. If that’s true I think the next best scenario is to modify the contract so that both parties are satisfied.
I respectfully disagree. The best case scenario is they follow the advice of the experts in their letter and just adopt the CCC.
The IOM’s so-called ‘promise to consider new terminology’ actually makes me laugh. All you have to do is to look at what they did to Gulf War Syndrome, which was to take a perfectly good name, ie ‘Gulf War Syndrome/Illness’ and XXXX it up beyond all recognition to ‘Chronic Multisymptom Illness’ to see the potential danger there. Who wants to take bets that the ‘new terminology’ they propose for ME/CFS actually goes the exact opposite way that the experts think it should go, ie from being more explicit and instead comes up with some douchebag name like ‘Chronic Subjective Not Feeling Well Experience Illness’? If the IOM were truly as much of ‘experts’ as they claim to be, one would imagine that the very first thing they would do when presented with such a situation would be to realize that they had no business being involved in the first place.
Also, the whole thing about ‘nothing can be done, the contract is signed’, etc, is a bunch of —–as well. That’s pretty much explains why the contract was kept under such tight wraps to begin with, doesn’t it? Words are cheap- people need to quit focusing on what is being said and start looking at what is being done. The DHHS intentionally and deliberately kept patients out of the loop from the get go and now we’re supposed to believe that our voice is going to be given appropriate consideration? Whatever, it’s just the latest version of the SOS. Just look at the IOM GWI case definition project information if you want to see what’s going to happen with ME/CFS, and it’s exactly what you’d expect- a bunch of closed meetings with exceedingly little information given out and at the end a big —– in patients’ faces. http://www8.nationalacademies.org/cp/projectview.aspx?key=49546
IOM Development of a Case Definition for Chronic Multisymptom Illness-
Meeting 1 – 06/26/2013 http://www8.nationalacademies.org/cp/meetingview.aspx?MeetingID=6711&MeetingNo=1
Meeting 2 – 08/14/2013 http://www8.nationalacademies.org/cp/meetingview.aspx?MeetingID=6795&MeetingNo=2
Meeting 3 – 10/30/2013 http://www8.nationalacademies.org/cp/meetingview.aspx?MeetingID=6926&MeetingNo=3 (The 3rd GWI case definition meeting happens on Oct. 30)
John I know you’re upset but some of the language you used was a bit too much for this site. I took the liberty of x’ing out some the swear words. (I think people can probably figure out what you meant:))
As I stated, I wish the IOM process would start over again. My guess is that it won’t, and if that’s so I hope everyone gets together and revises the contract so that both sides are satisfied.
The IOM, by the way, had nothing to do with inventing the term “Chronic Multisymptom Illness”; that term popped up in this research paper 7 years ago.
Am J Epidemiol. 2006 Oct 1;164(7):708-9; author reply 709-10. Epub 2006 Aug 30.
Re: “Chronic multisymptom illness complex in Gulf War I veterans 10 years later”.
Hunt SC, Jakupcak M, McFall M, Orsborn M, Felker B, Larson S, Klevens M.
The references in that paper indicate that the term dates back to at least 1998….
Chronic multiple symptom illness affecting Air Force veterans of the Gulf War. JAMA 1998;280:981–8.
Most recently, Dr. Baraniuk, an ME/CFS and GWS researcher used it in 2013 interchangeably with Gulf War Syndrome…..
Glob J Health Sci. 2013 Feb 4;5(3):69-81. doi: 10.5539/gjhs.v5n3p69.
Carnosine treatment for gulf war illness: a randomized controlled trial.
Baraniuk JN, El-Amin S, Corey R, Rayhan R, Timbol C.
Division od Rheumatology, Immunology and Allergy, Georgetown University, Washington, DC 20007-2197, USA. email@example.com
About 25% of 1990-1991 Persian Gulf War veterans experience disabling fatigue, widespread pain, and cognitive dysfunction termed Gulf War illness (GWI) or Chronic Multisymptom Illness (CMI).
This is (x). We should listen to our 50 expert doctors and support them fully. Stop the IOM contract, and use the CCC defintion. The Gulf War Illness fiasco is right where we are headed if we do otherwise.
If you’ve ever read Osler’s Web, there is documentation to show that the insurance companies were behind the name “chronic fatigue syndrome”. It’s happening again folks. We should do now what we should have done then, or suffer the consequences for another 30 years.
Please watch the swear words..
Sorry, I guess the other guy was rubbing off on me. How about this – this is nonsense, drivel, garbage, and rubbish. (synonyms courtesy of the MacMillan Dictionary)
Well said. This is all just more intentional abuse of us, another attempt to muddy the science and perception of this horrible disease. Enough is enough.
To those who say, “let’s just lie down and accept that this contract is going forward”- the 16 new signatures is another sign that we CAN get this contract cancelled!
HHS has successful oppressed us for 30 years. some would say this is proof that their plans always work and we can’t stop them. But every attempt to abuse people always works… until it doesn’t. There comes a point of critical mass, a turning point where the oppressors are forced to stop because the pressure on them becomes too intense.
This really looks like the turning point for us; our Rosa Parks moment where we say “No, we won’t go to the back of the bus any more!” that finally sparks a huge change. Never before have our experts supported us before other than one at a time here and there. NOW FIFTY SO FAR have come together to support us and say “NO MORE.”
We have momentum now (see also that Canary in the Coal Mine has already raised $73K in just four days and there are three other ME docs in the works) This is the turning point. We can push this boulder over the hill now. Lets ALL get together and give it all, that our health will permit. NOW is the time to call in your favors and also just plain beg your friends and family to support us in crushing this contract. This is what I am doing and if we all do it, we will exponentially increase our force and become unstoppable! The AIDS patients did it. Let us do it! If not now, when?
Cort, thank you for the article, but I have to vigorously disagree with you on the whole notion of a “Middle Road”, and here are 3 examples why:
1) You said, “ME/CFS experts in collaboration with DHHS officials and IOM representatives should get together and WORK OUT A CONTRACT THAT IS RESPONSIVE TO BOTH THE ME/CFS COMMUNITY’S NEEDS TO HAVE SUBSTANTIAL ME/CFS EXPERT INPUT, AND TO THE DHHS’S DESIRE TO HAVE OUTSIDE INPUT.”
The entire IOM and HHS process to date hasn’t been about the DHHS having “outside input”. It’s about the DHHS having outside CONTROL of a disease that – judging from their arrogant actions – they still know vanishingly little about.
2) Then you said, “THE ME/CFS COMMUNITY WOULD PROBABLY HAVE TO GIVE UP THEIR DESIRE FOR THE CCC TO BE THE STARTING PLACE”
WHY should the experts in a disease give up the pathognomic sign – Post-Exertional Neuro-immune Exhaustion – just to “play nice” with a government that has condemned ME/CFS patients to a medical wasteland for 3 decades? Cort, I do acknowledge that we’re on opposite sides of the fence re: lumping vs splitting, and I’m challenging you that your biases – not reason – are driving this insistence that 50 experts who have signed a letter that virtually says, “Exercise triggers relapse” (the essence of PENE/PEM), should suddenly capitulate and vote in essence for exercise-therapy-for-all.
You need to do better than that: give us a logical, science-based reason WHY 50 of the world’s best experts in ME/CFS should capitulate on the pathognomic sign, embodied in their support of the CCC?
3) Then you said “… and the DHHS would have to give ME/CFS experts more of a say. THIS COULD PRODUCE A DEFINTION THAT’S REPRESENTATIVE AND ACCEPTED BY BOTH THE ME/CFS COMMUNITY AND THE LARGER RESEARCH/DOCTOR COMMUNITY.
The issue is NOT producing a definition that uninformed doctors will “like”. That’s along the lines of Beth Unger’s argument that the CCC is “too complicated”, another argument that we should “play nice”, and not ruffle the medical community’s feathers with – gasp – a bona fide complicated, multisystem disease. The general reaction among the patient community to that line of Beth’s was, “Well DUH, the disease IS complicated”.
Our goal shouldn’t be to produce some blancmange, unoffensive, meaningless descriptor of ME/CFS. The goal is to describe the xxxxx disease! (to use your xxxx vernacular 🙂 ).
Maxine – the reason I proposed a middle road is that there has been no middle road.
This has nothing to do with being nice…it’s a matter of doing what works and recognizing that there are two sides to this process, and that the DHHS will have its say. You can be angry at the fact, you can say it’s wrong, you can say whatever – but the DHHS is going to have a say in this. So far they’re the only ones, thus far, that have had a say. I’m proposing a way to get ME/CFS experts in there to have their say.
The DHHS will probably not want to start off with the CCC at the template; I disagree with that – but that’s the way it is. The DHHS also want to have more outsiders lend legitimacy to the process – they’re going to have to give up on that. If enough ME/CFS experts are present then giving up the CCC as the starting place is not that problematic because it will be the defacto starting place for them.
Why would the 50 experts engage in negotiations? Because if the letter doesn’t work that’s their way to altering the process. PEM is one place I would draw my line in the sand, and I think the rest of the community would as well, and I think EVERYBODY knows that the buck stops with PEM in the ME/CFS community. No doctor’s definition that doesn’t include PEM is going to work and I don’t see any reason why any definition for doctors would not emphatically state that “over-exertion greatly exacerbates symptoms in this disorder”.
Is there a question about that? Many studies have shown that over-exertion increased symptoms and causes flares. Every expert agrees with that. The CDC has produced ME/CFS experts video’s stating that. Post-exertional malaise is not going to disappear from any definition for doctors or otherwise…for multiple reasons.
OOPS I hit “Send” before I was ready on my post above. So my complete post is actually at this link (https://www.facebook.com/notes/maxine-smith/a-rebuttal-to-health-rising-on-experts-expand-efforts-to-stop-iom-contract/600823269976709), also provided, 3 comments below LOL. I’m upside down again with nite/day, so crashing for now. But I just wanted to comment briefly on what you said here Cort:
“No doctor’s definition that doesn’t include PEM is going to work and I don’t see any reason why any definition for doctors would not emphatically state that “over-exertion greatly exacerbates symptoms in this disorder”.
Cort, the CCC is the first definition to require PEM. So why not come out and support the CCC? But then you did sign the letter too. So why support the IOM? I’m too whacked now to challenge you more lucidly – but you’re talking out of two sides of your mouth.
On the one hand, you’re advocating that we play Russian Roulette with the inexperienced IOM committee. Scratch inexperienced… they have experience in sodomizing the GWI veterans. On the other hand, you’ve signed the letter advocating that the contract be cancelled. Or did I get that wrong?
I do support the CCC, and I support the experts and I signed the advocates letter.
I’m not supporting the contract as written. I’m proposing that if the experts letter fails – and my guess is that it will (15 more experts is probably not going to make the difference, but we’ll see) – then the next step is to try and change the contract.
Excellent! I recommend everybody here read the extended message linked, especially if you have questions about which way to go on this issue, or are confused in any way.
Cort please don’t defend their actions, we are not stupid. The definition IOM is going to come up with for ME/CFS will be similar to the Gulf War Illness, why wouldnt it? It has been over a DECADE of nothing, no meds, no off use meds like IV Fluids, Low dose Naltexone, AIDS Antivirals, immunovir, and of course the proven Ampligen.
WE ARE VICTIMS OF BULLYING BY THE VERY PEOPLE WE ARE PAYING TO HELP US!!! WE HAVE A RIGHT TO BE ANGRY!!
I agree. Don’t be naive Cort.
I’m stuck on the word scatological.
I just deleted a comment. Just so everyone knows anyone who calls me a ‘traitor’ is not going to get their comment posted. Any who swears is not going to get their comments posted.
I want to point out a couple of things.
Of course you have a right to be angry. I hope the petition by the experts does cause the contract to be repealed and the process to start over again, but if it doesn’t, and judging from what I’ve heard from people that know better than me – there’s little likelihood of that – then soon it will be time to start thinking of what’s next.
I propose that if that happens then what’s next is that the two sides try and work something out. The alternative to that is simply having the DHHS going ahead and doing what they want.
That would actually fit a few ‘advocates’ to a ‘T’; then they would have more evidence for how bad the DHHS or Dr. Unger or whoever the offending party is at the moment, – that reinforces their worldview – but notice how little how little progress has been made.
I would be hugely surprised if the definition turned out to be the same as Gulf War Syndrome – who’s definition has not been created yet. ME/CFS has three clinical definitions produced by ME/CFS experts that highlight post-exertional and a body of research evidence that validates that. There’s no way any definition that doesn’t highlight PEM is going to accepted by the ME/CFS community, and if it does, it will go the way the Empirical definition but more quickly. The protests now that you see will be minor compared to the protests that occur if that happens.
But I don’t see that happening. The panel would have to reject too much. It’s being specifically told to attend to the definitions produced by numerous ME/CFS experts. I think the possibility that a panel, which will include ME/CFS experts (we don’t know how many), would discard years of work from the experts in the field – and the two letters signed by ME/CFS experts, is low – and, as I noted, if it did – it wouldn’t work anyway. Any definition will need to be legitimized by the ME/CFS community, and that is aspect of the definition that the panel will have to look – will it work? Will it be accepted and used? After the debacle with the Empirical definition- in which years of work went down the drain because the community did not accept it – that has to be looked at.
That’s probably because the scatological term used was x’d out.
THANK YOU…. BUT
Cort, thank you for the article. I genuinely enjoy many of your articles, but this is one I find myself vigorously disagreeing with. Indeed, my response got so long that I figured it would be kicked to the curb by word limits.
So here’s a link to a different perspective: https://www.facebook.com/notes/maxine-smith/a-rebuttal-to-health-rising-on-experts-expand-efforts-to-stop-iom-contract/600823269976709
Cort you have every right to your point of view!! I’m not understanding why people keep attacking someone who doesn’t have the same view as theirs. Don’t let these attacks against you keep you from posting and expressing your views.
I think that peoples pain and suffering has them lashing out at others in our community because they can’t lash out at the HHS and get a response back. You and others they can lash out at and know that you are there to respond back.
Who wants to spend all their energy hosting a website that gives valuable information to ME suffers to be spit on and called a traitor.
Take you anger out on those who deserve it….HHS.
This IOM contract is not about evidence or science. It is about conducting an ivory tower literature review with stakeholders being pushed out of the central decision-making process. The fact that stake holders are allowed to comment from the audience (rather than being inside the process) makes this pretty clear.
If the HHS is really all about science and proof, they would establish a pool of subjects using a similar method that was used for XMRV and the current multi-site study, and then they would see how well each of the existing definitions is able to differentiate them.
But this is not what they are doing. And using a literature review only serves to compound the problem, because it is using a body of information based largely on weak definitions.
There is a study involved. I have no idea what it will contain; they have not to my knowledge said so, but you bring up the good point that the CDC’s multi-center study will certainly provide important information – as will Dr. Jason’s continuing studies – although I think Jason’s are probably focused on a research definition.
CFSAC might have done better to wait until the CDC’s multi-center study was done before asking this topic to be taken up first.
Cort, once again, you’ve boiled down the important issues and pointed out what’s going on to those of us, who, like me are living under a rock. Whether or not people disagree with your POV (personally, I don’t have the energy to debate much of anything, and I’m glad I don’t have to), I want to thank you for leaving John’s description of a possible name the IOM might come up with, “some douchebag name like ‘Chronic Subjective Not Feeling Well Experience Illness’.” It made me laugh out loud, and the laughter made me feel better. (You’re welcome to delete this post if “douche bag” is a scatological term. I just loved the whole description.)
You’re the best. Thanks again!
Oh, I forgot, BIG thank you too for including the link to the letter. I was SO impressed with it!
I think it is possible to create a middle way, but here is how it starts: cancel the IOM contract.
Then consult with our top experts, CFSAC, and the patient community until there is general consensus on how to proceed and the instructions given to the IOM, which would be part of what is currently a secret contract. This might take a year or more.
Then issue a new IOM contract if its still warranted.
Unilateral action, action in defiance of CFSAC recommendations, secrecy and a lack of accountability, violation of trust with the patient community – these are not how a contract is accepted by stakeholders. If the HHS has properly consulted with the experts, CFSAC and the patient community we would be behind their actions, not against them.
However the expert decision to adopt the CCC puts the urgency of any IOM redefinition at a minimum. Why not wait until there is substantive new evidence, like possible full validation of the 2 day CPET as diagnostic, or possible full remission for a subset on Rituximab? Why the urgency?
I agree Alex. Unilateral action obviously didn’t work in this case – and the stakeholders – the ME/CFS patients, researchers and doctors – need to be taken into account. I argued that very strongly in my earlier blog. I I imagine the DHHS realizes that now.
I agree with you on the timing as well. I hope that the next year or two will provide evidence of subsets in ME/CFS which will explode any definition that’s been created. We have the CDC’s multi-center study, Dr. Jason’s studies, Lipkin’s results, etc. which may all come to bear on a definition…..
However, and I forgot about this in my first blog – a new definition was CFSAC’s number one recommendation, and that’s apparently why this initiative came about.
Unfortunately, the DHHS, managed the process in such a way as to inevitably arouse suspicion. As I said earlier – What were they thinking? I imagine they weren’t thinking…
There is 30 years of Anger here, None of the Government Reps. we deal with were in their current position then. The Highway to get what we want fast is to March on D.C. That has little to No chance…
So, where are we? What can we do? Well the CDC has Given Dr. Andy Kolgelnik a longterm grant to do a study with a total of seven of our ME/CFS experts clinical sites. CDC does not mandate how the experts diagnose ME. It is all on our experts…Dr. Ian Lipkin is soon to publish his clinical study results soon(Multiple papers I hear). So, even before our experts come up with a definition, we need this data to be presented and published.
Having other expert eyes involved from other areas of research is not a bad thing. Now as people read this, this does not need to be an All or Nothing deal. Getting IOM involved could bring money, we have been asking for that. We want a real definition, we have been asking for that, We want clinician education, we have been asking for that. Well, we have the support of many experts, but not all, why?
I see a way here for us to work this out, without an all or nothing deal. Call it what you will, Middle of the road, Deal making, Negotiation…What matters is we do it right and ” they get it right “. I supported our expert’s letter, I have spoken with several experts, they are not declining input from other areas of science. Let’s do this right and together.
Thanks for listening…
I’m glad you bring up the March on Washington. Much of recent events have brought this history to mind.
But there were things that happened prior to the March, 50 years ago.
Many PWMs are on the fence, they want consensus on how to move forward and our most well known and respected advocates are saying “We won’t win, better to compromise now.”
But there is never consensus in advocacy. :/
I am not against the IOM contract out of anger or pain from the trauma that’s been inflicted upon me. I am against it because it can’t ever work, or achieve the hopes that the advocates promoting working with it promise. It is not the organization that can do what we need. Simply put.
MLK had has hands full convincing African Americans to support the Civil Rights movement as much as he did convincing White America to accept the rights of all of its citizens.
Maybe in looking back people think the Civil Rights Movement was what all African Americans wanted, but it was not. Yes they wanted to not be oppressed. Yes they wanted things better. But there was not consensus on how or when or what should or shouldn’t be done.
Even the NAACP fought King and the Southern Leadership Conference. It’s been years since I studied the history, so I don’t remember how long or what it took to bring them on board. But the NAACP was the number one, largest National African American Advocacy Organization at that time. That was the only voice for all African Americans. The NAACP in effect said ‘Don’t do this! You’ll make things worse.’
‘Not only will we not get what we need we will be much, much worse off.’
Had King listened, white mainstream America, would never have seen the truth about African Americans and their lives.
MLK and the SLC campaigned as much to bring African Anerican people together in this as they did in non violent protest action.
What could be worse for us?
By resisting the IOM contract with all our might and as many numbers as we can muster we at least have a chance.
We can be seen by America and the world! Who we are and what this disease really is. In the beginning, African Americans could not March on Washington. They could however walk. And walk they did. The first major victory: merely not taking the bus, for as long as it took.
We can protest from our beds if need be. I am. With social media, we don’t have to continue to go unseen.
There is no reason to give in and give up at this point. It’s not junior high. There’s no reason to fear not being allowed to sit at this cafeteria table, because we angered the cool, more powerful kids. There is no real power being offered to MEcfs advocates and experts at that table.
Our power is in saying NO. No more.
To paraphrase MLK, we should choose to no longer participate in an immoral system. The system falls apart without our participation: not us, we grow stronger.
With all due respect, to you and your lifelong advocacy efforts, which I admire, appreciate and am grateful for.
But please don’t speak for me, when you say I act in anger. I do not. I act with resolve.
I want to reiterate, again – and it was not spelled out well in my blog – that my proposal that the two groups get together and work things out is predicated on contract not being repealed.
I hope the contract is repealed. I’ve signed several letters supporting that. If it’s not I hope the two sides get together and work it out.
My guess is that the contract is not going to be repealed. I don’t think 15 more ME/CFS experts, as impressive as they are, is are going to do what 35 didn’t. I do think they may make it more difficult for the IOM contract to proceed as is, though and, if the contract is not going to be repealed – then changing it is the next thing to focus on.
I would be VERY surprised if the government agreed to the CCC as a starting point because their MO in general, is not to bend the discussion in one direction or the other. They want an objective process with outside inputs – that’s generally how scientific inquiry works – so I would be surprised if they would agree to any definition as a starting place
I don’t think this is a problem, however, if sufficient numbers of ME/CFS experts are on board. If they are then the CCC will be the defacto starting place. If the contract is not repealed then, ensuring that ME/CFS experts are well represented on the panel – is the key for me
I am not entirely clear why you think there are two separate groups who would not come together if the contact is not cancelled.
It’s simply mind boggling to me.
I did not say you were angry, I said there is 30 years of Anger Here (In general related to the illness and the Gov’t. When I say a middle ground, I am not saying “Lets give them Half” I am saying we should be open to discuss. “Fools Argue Wisemen/Wisewomen Discuss”
Is it not possible to Discuss a path that benefits us patients. If you have seen me at any ME/CFS related meeting, then you know I am willing to fight for what is best for patients. I was willing to put my life on the line to move Ampligen forward, not for me, I have access to it, but for everyone else who has nothing and suffers daily. I do not wish to fight with other patients over the name of this illness, I want us to be thinking bigger, I want it all for this patient population and I think we have a chance here.
Do I trust everything that any HHS Rep. tells me??? Nope, but I do trust some. Do I trust all ME/CFS doctors, Nope, but I do trust some.
So who should we listen to, who will the IOM work with and listen to, who does the Gov’t ( HHS,NIH,CDC, NIAID…) trust and who will they listen to??? We have a Blueprint. When there was a possibility that XMRV was in the Blood supply, who did the Gov’t go to, Dr. Ian Lipkin. Who did Dr. Lipkin go to, Drs. Montoya, Bateman, Peterson,Klimas, Levine, Komaroff and Felsenstein.
Do I know and trust all these experts, Nope, but I know and trust the majority. The ones I do know are not bashful or timid, there are many Patients/Advocates who also know these clinicians and the others on the Letter…
My Point, I feel very confident in our Advocates to watch how this unfolds, I trust the experts and I know that HHS knows what would happen if they tried to ram a Dog and Pony show down our throats, won’t happen…I for one will not Allow it.
I hope we can all work together as Advocates for the patients who need it so desperately. I also hope we can work with HHS.
Often people can be in a fight so long, and be up so close so long that they can’t see the opportunitiy that outsiders see. They still operate with the same methods and people they always have.
This is an absolutely rare opportunity in politics, and this is a political and not a scientific fight, at this moment in time. There may also have never been a fight as important as this.
One can’t fight for and against something at the same time. One has to choose ultimately which side they are on, which route to take. The NAACP or the SLC.
One never regrets having fought and lost. But we will surely regret not having fought at all.
I am not in a hunger strike, but I am dying from this illness all the same. And not metaphorically.
Forget about Ampligen, most of us can’t get medical care that isn’t killing us. (Not that Ampligen is not important, or your efforts be dishonored.)
It seems clear, as well, that many of us fellow sufferers and the realities we face have been invisible to our strongest advocates as well.
I want to make my last efforts count. And not use them to tell people to give in and give up, when it isn’t yet the time to regroup efforts. I won’t tell them they won’t win or won’t get the contract cancelled when all avenues haven’t been utilized, and only half-heartedly tried.
Do we remain invisible to America and the world? Do we go along without resistance?
I am not foolish, nor unrealistic. I am not inexperienced at politics at this level.
Instead of pressuring fellow patients we should be pressuring the Democrats RIGHT NOW to put pressure on Sebellius to quietly walk away from the contract and the increased political and media pressure on the way. They do not want to have to go through a reappointment process that will derail, not just the Affordable Healthcare Act, but every Democratic initiative from now till next March.
Because we are preparing that campaign, and we really don’t want to have to drag Sebellius through the dirt, but this is life and death. And if shining a light on this and our Gulf War Veterans is needed for our survival, it will have to be.
Self preservation is much more powerful in politics abd politicians than appeals to emotions, morality, science or facts.
The Administration is weakened by Sebellius now, as much as we are hurt by the contract with the IOM.
I don’t have food waiting for me, after a strike. And neither do hundreds and thousands of us.
I can’t cook and have no caregiver. I can’t get my food stamps reinstated because I’m too sick to go through three hours of waiting at the DHS office.
But I can say NO. I can grassroots organize and use my pre-illness skills and experience. And I’m not alone.
We’d like you to be with us.
There’s nothing else to say but “what she said!”
Delia, Im with you on this, we can’t be politically correct at this point. We just need to follow the money here to see why they chose IOM. I have been ill more then a decade, I have lost it all too. I am better off then most because I have found my poor mans Ampligen. How can we contact each other? I live in Oklahoma. We have got to start connecting together. Any ideas on how we can connect without putting it on this website? Maybe Cort would be willing to give you my email.
Cort, This not about what’s right for the DHHS! There is no middle ground. The last time I checked we are governed by the U.S. Constitution and “We the People.” This is not a despotic government. We are taxpayers. We pay their salaries. We don’t work for them. They work for us!! They are called to serve us! It’s their duty and it’s in their oath. We are not to bow to the pressure from government instead, it is the government that must yield to voices of the people. “We the People.”
If you have researched VA IOM contract properly, this was a ten year effort to develop patient criteria. Get this straight as it is very important. 10 years, 9 reports and the ruling in every one of their reports concluded from the findings and fact, that ME/CFS is a psychogenic disorder treated by CBT/GET/ anti-depressants, alternative therapy, acupuncture, talk therapy. Period!
To rule otherwise in this ME/CFS contract, would mean nullifying their conclusions in each of their reports involving Gulf War Veterans. This is never going to happen, Period!
The IOM Panel does not operate as you wish for or hope that it would operate. Once the IOM Panel takes control, outside control is lost which unfortunately, A Congressionally mandated Research Advisory Committee realized to their detriment.
Scientific data from the RAC was excluded as well as testimony from the patient community. Decisions are made behind closed doors.
In addition, there is no such thing as a panel that is not biased. Each member has a predisposition toward bias. However, according to the IOM Panel rules, they do state they exclude bias by excluding those who have the most input and knowledge.
It sets up a kangaroo court system where the outcome is predetermined. I present to you the IOM Panel 10 year historical record as proof. I present to you the testimony of Gulf War Veterans advocates, the RAC, patients as clear indication of that proof. See: https://tinyurl.com/koqfdnb
The panel was predisposed to a psychogenic therapeutic model. The consensus model operates on the principle of the least common denominator to achieve a decision. It is the madness of the logic that is so bewildering. It is so far out there that it must escape people’s attention. It is comparable to offering treatment protocols to heart patients by scientists that have no experience in cardiology.
“Nonetheless, one curious and disturbing finding across heterogeneous physical disorders has been that fatigue severity rarely correlates well with measures of disease activity
(e.g., in rheumatoid arthritis, hepatitis C). Functioning is often more closely tied, even in physical conditions, to psychological factors and stressors. In addition, activity reduces fatigue and is well tolerated in most medical conditions, and inactivity results in fatigue.”
This sentence below makes me question whether you read or understood my blog.
“Cort, This not about what’s right for the DHHS!”
To reiterate, if the DHHS has produced and paid for a contract, and that contract is not going to be repealed, then the next step would be to try to redo the contract to ensure that a sufficient number of ME/CFS patients are included. How you somehow twist that into doing what’s ‘right for the DHHS’ – I have no idea.
I realize the IOM committee has control over the process; that’s why it’s vital that we get as many experts as possible on there – as is noted in the blog…
I was unaware that the IOM produced other reports on GWS.
With regard to this “”Nonetheless, one curious and disturbing finding across heterogeneous physical disorders has been that fatigue severity rarely correlates well with measures of disease activity (e.g., in rheumatoid arthritis, hepatitis C). Functioning is often more closely tied, even in physical conditions, to psychological factors and stressors. In addition, activity reduces fatigue and is well tolerated in most medical conditions, and inactivity results in fatigue.”
Study findings in ME/CFS have correlated disease severity with physiological measures many times. Here’s a sampling.
Daily cytokine fluctuations, driven by leptin, are associated with fatigue severity in chronic fatigue syndrome: evidence of inflammatory pathology.
Stringer EA, Baker KS, Carroll IR, Montoya JG, Chu L, Maecker HT, Younger JW.
J Transl Med. 2013 Apr 9;11:93. doi: 10.1186/1479-5876-11-93.
J Affect Disord. 2012 Feb;136(3):909-17. doi: 10.1016/j.jad.2011.09.010. Epub 2011 Oct 2.
Increased IgA responses to the LPS of commensal bacteria is associated with inflammation and activation of cell-mediated immunity in chronic fatigue syndrome.
Maes M, Twisk FN, Kubera M, Ringel K, Leunis JC, Geffard M.
Behav Brain Funct. 2010 Dec 29;6:76. doi: 10.1186/1744-9081-6-76.
Plasma neuropeptide Y: a biomarker for symptom severity in chronic fatigue syndrome.
Fletcher MA, Rosenthal M, Antoni M, Ironson G, Zeng XR, Barnes Z, Harvey JM, Hurwitz B, Levis S, Broderick G, Klimas NG.
Department of Medicine, University of Miami Miller School of Medicine, 1600 NW 10th Ave, Miami, FL USA. firstname.lastname@example.org
NMR Biomed. 2010 Jul;23(6):643-50. doi: 10.1002/nbm.1512.
Increased ventricular lactate in chronic fatigue syndrome measured by 1H MRS imaging at 3.0 T. II: comparison with major depressive disorder.
Murrough JW, Mao X, Collins KA, Kelly C, Andrade G, Nestadt P, Levine SM, Mathew SJ, Shungu DC.
Severity of symptom flare after moderate exercise is linked to cytokine activity in chronic fatigue syndrome.
White AT, Light AR, Hughen RW, Bateman L, Martins TB, Hill HR, Light KC.
I agree with ecoclimber.
A few more experts on the panel than they were planning isn’t sufficient. I would welcome an all-expert panel with non-experts in ME, but who are experts in other areas like case definitions (and maybe medical specialties like neurology, immunology, etc.) made available as NON-VOTING consultants to the experts. Then they could update CCC in a satisfactory fashion.
But this isn’t the IoM way. They explicitly state their policy for all contracts is they use non-experts to eliminate bias that may come from being funded by government research grants.
So, now that you know that all of the nine most recent GWI IoM reports have said CFS is just treated with antidepressants, CBT and GET and all allude to the “fact” that CFS is psychogenic, does that change your mind at all?
Bottom line, the contract must be cancelled. We are in a fight for our life. I wish you would help out.
Btw, the quote that ecoclimber posted about fatigue not correlating with disease severity was a quote from the CFS section of an IoM GWI report. The section was authored by Dedra Buchwald.
They put fake CFS scientists like Buchwald and Vernon on the GWI committees so the outcome about GWI and other illnesses addressed including CFS is junk.
What stood out for me was the following sentence in one of your replys Cort:
“They want an objective process with outside inputs – that’s generally how scientific inquiry works”
Although my entire life I have been a person of consensus, meeting halfway, discussion, compromises, … it soon became clear to me that in this case, the IOM contract, meeting halfway, going into dialogue, sending some of our own advocates/well-known and trusted researchers “in” to steer things in the right direction, will be of no avail.
They are asking for members without “bias” aren’t they?
Who will that be? All of our researchers are biased of course. They deal with us and/or their ME or CFS research all the time. So they are in fact “biased”.
But: isn’t the IOM in itself biased? They got a contract. Money is involved. They can drag this thing as long as a decade, looking at the VA GWI experience.
And then knowing what they already wrote about ME/CFS in their GWI reports. Not biased?
Do they really want objective scientific input at IOM? Are you sure?
Why then not (beforehand) contact the (now) 50 experts, or at least a fair number of them, to ask them if they wanted to present their science and their insight and their recommondations?
Objective scientific input to come up with a new definition.
I thought of Ian Lipkin too in the beginning. I trust his judgement. As I do trust many of our researchers judgement and good intentions towards us.
The question is: how many seats will there be around the table?
How many of those seats need to be filled with trustworthy researchers to have a fair chance for a good outcome?
Does anybody know?
Please don’t get fooled. I know your intentions are good. I don’t doubt that.
But take a look at what happened in the UK, in the Netherlands and in Belgium.
Those countries are far far away for most people in the US and seemingly not important.
But in this case, ME//CFS and politics + insurance, those countries are like the “test cases” of what is to cross the ocean. And now the ocean finally has been crossed. As I knew it would.
The endgoal is predictable: getting CFS (ME will be totally swallowed up into the CFS group) to an even broader level: “physically unexplained complaints” (which recently happened here) or a name similar to that.
The endgoal has already been set.
HHS does not involve IOM in this because of an “objective scientific result”. It involved IOM because they can later on wash their hands in innocence and say that IOM is an independant institute with no scientific bias.
Do you really want to risk so much when all arguments to get involved in the IOM committee are based on hope, on “they cannot do … because they know we’ll …” ?
They aren’t afraid of us Cort. What can you do afterwards? What?
Researchers can choose not to use their “new definition” if it’s too broad, but what about MD’s? What about medical students? What about insurance agencies?
They will all get those latest criteria to work with, to evaluate with, …
Patients will be denied more and more valuable tests (as happened over here).
And if a broader name will be part of the “outcome”, then things will really get bad.
If you thought things are bad already for patients, think again. It can get worse. A lot worse.
Are you willing to give the steering wheel to an agency that knows nothing about the science behind ME and CFS? An agency that already spoke its mind about it a few times and it wasn’t very “scientific” what they had to say was it?
You are trusting them to hit the breaks because we are standing there, together with 50 researchers/clinicians, blocking the road.
But what if they simply don’t hit the breaks and run over us? Because they know where they are going and won’t stop untill they reach their destination?
My first reaction was similar to yours and Bob’s. It really was. My “compromising” nature.
I said: isn’t it wiser to get our researchers in there to at least have some leverage and involvement in the process?
Because I too believe this thing is going to happen. The contract will probably not be ended.
But if there is one moment in time we need to take a firm stand, that time is now.
Say NO to all involvement. There are too many “ifs” “maybes” “probablys”, … while so much is at stake for so many patients.
Don’t give them the satisfaction of saying afterwards: “scientist were involved” and “there was patient transparacy and dialogue”.
There will never be enough of “our” scientists in that room to make sure of a favourable outcome …
I agree with Dalia, above. Trust is earned, and the responsible US agencies have not behaved in a manner that engenders trust. To believe otherwise is to behave like an abused dog/child/spouse/etc. who believes that the abuser “loves” them and didn’t “mean” to torture and abuse them. Look at what Europe’s ME community has experienced. The psych lobby in Europe is going strong. Otherwise, Danish authorities would not have drug Karina Hansen from her home and locked her in a psych ward, still. The psychiatrists are flexing their muscle and making an example of her. Protest too strongly still, and social services takes your children. This has happened. This happens! European healthcare has been rationed for decades. The public is happy to swallow the belief that ME patients are malingerers, so thus millions can be “guilt-free” cut off from research/healthcare/etc. funds. We are living a history -a continuing story of abuse – that is in league with government funded-and-enforced sterilization, lobotomies, eugenics, criminalization of homosexuality, etc. It is incredibly naive and Stockholm-syndrome-esque to believe that the psychiatrists and insurerers (public and private), etc. are going to do the right thing. The Wessely school succeeded earlier this year in implementing “Somatic Symptom Disorder” into DSM-5. The “dark side” powers have been working diligently to align their chosen stars, and now they’re steering the ME ship accordingly.
It has frustrated me that we have been unable to march on Washington, and be a voice. I’m starting to think we should do what we can do, start a list of people suffering from ME/CFS that are willing, and commited to do a fast. I’m talking about across the USA, people in every state, and possibly GLOBAL. Surely out of a million suffers we could get a least a 1000 people to do this. We would get unprecedented press, and make National news, probably International news. We could be the first movement in history to make changes without marching on Washington. We need to be linked together, and because of technology we can make this a huge movement. Who’s ready to put ME/CFS front and center.
By claiming that we should consider that bad definitions (government-directed) have jumpstarted the creation of new, more accurate definitions you imply that the kind of horrific misrepresentation of the illness that could result from this IOM contract would self correct through involvement of the community. This fails to recognize what has happened (or rather not happened) with the good definitions – CCC and ICC. CFSAC members could not even get the CCC accepted as an interim definition. Fifty experts and counting who have come to a consensus recommending the CCC be adopted immediately receives no response.
You state “They [presumably the bad definitions] ensured that the community would not accept processes that were not representative of the broad community.” Given the expressed wish of the 50 experts that the IOM contract not go forward and the enormous community support for that opinion, is that not what you are doing right now – accepting a process “not representative of the broad community”?
As I said before I think there is so much heat and light on this issue and there is enough research evidence that I would be absolutely astonished that PEM would not be the trademark symptom of any new definition devised for physicians.
That’s very different from having the government put their stamp of approval on a definition before they’ve submitted to an objective analysis. That process – looking at all the definitions before creating one – is kind of the MO for these kinds of processes and it add validity to the process.
Hey, I wish the DHHS would start with the CCC; I think it’s the best description of ME/CFS – but if the DHHS is going to create a contract to review definitions and come up with a new one, I would be very surprised if they would start out with – this is the definition! I’m not endorsing it – I’m just saying this appears to be how the govt does things.
They have specifically directed the committee to give special attention to the CCC in the working document.
The key is getting enough experts on the committee to ensure that their views are strongly represented.
“They want an objective process with outside inputs – that’s generally how scientific inquiry works”
They have this already. Twice over: the CCC and the ICC, not to mention what went into the ME/CFS primer. And by the way, none of those people got a million dollars to do it.
They want inputs from outside the ME/CFS world. Given the ME/CFS does not have a good name in the research field bringing in outside experts to validate a clinical description of ME/CFS would probably substantially add to its legitmacy – so its a different kind of process.
I want to point out that the DHHS is doing what CFSAC asked them to do; a new definition was the first recommendation from CFSAC – and the DHHS is pouring a million dollars into creating one and disseminating it to doctors. If it was not for this controversy, I think this would be counted a real progress.
I want to point out that this is a definition to help doctors know ME/CFS when they see it; its a descriptive definition – it doesn’t say what ME/CFS is or isn’t; it’s not a treatment guide for ME/CFS and it’s not research definition – it’s a description of what ME/CFS looks. This is not that difficult of a process (and I don’t know why it cost $1,000,000 but if you’re asking me to get upset at the DHHS for spending on ME/CFS finally – that’s not going to happen :))
Bob and Cort, you seem to be forgetting that only 1 health care provider out of 50 has made the decision to back away from the CCC to work with HHS. Forget the Milk Toast positions – you are harming the most important movement in ME/CFS ever! Take a strong stand with your fellow patients and doctors! Why should patients fold when the doctors do not!?
Does anyone actually read my blog? Or do you decide beforehand what it says? For the record, once again, I hope the contract is repealed. As the blog indicates, I felt that virtually everything that went into producing it was done incorrectly. I also support the CCC and the ME/CFS experts letter and I have signed onto several letters.
I hope the contract is repealed BUT if it is not, I suggest talking with the DHHS to in order to redo the contract so that as many ME/CFS experts are present as possible. If that happens the ME/CFS experts may have to give up their insistence that the CCC be the starting place because the very object of an objective review is to not prejudge the ending. However, with all the ME/CFS experts backing the CCC – that should not be a problem – so long as they are included in the panel.
Can you somehow put together those two strands of thought?
A) Hopefully the contract will be repealed
B) If it is not then the next step might be……X
Sorry Cort, not really – the letter from the 50 experts is very clear in its message and intent. You are doing nothing but trying to dilute the message. When you Stand for Everything, you Stand for Nothing. When everyone is in charge, no one is in charge. Set your fears aside and take a meaningful stand!
(a note for you from my sister, who cannot do computers)
To Cort and Bob,
After the September 10 presentation of Dr. Lipkin from CDC, I wrote him a letter and included the CCC position paper w/ signatories. The letter was direct and honest and I cc’d Dr. Peterson and Senator Reid.
Dr. Lipkin picked up the phone and called me. During the conversation (I actually said little due to shock) he said the only way ME/CFS patients will get ahead is to act like ACT-UP of the 80’s.
We do not have the energy to throw blood on the Capital steps or chain ourselves to FDA doors but as Delia and others have said, we can say “No More” in other ways.
Do you disagree with the brilliant Dr. Lipkin??
Are you reading my blog or another blog?
I hope the contract is rescinded. I admit I probably moved too quickly when I was told there’s no way the contract would be rescinded.
In retrospect, I would not have included the ‘middle way’ until it was clear what’s happening with the contract. That section muddied the issue; however, I signed the advocates letter and I hope it is rescinded.
We’ll see what happens…
Cort, enough with the “did you even read my blog?” Yes we all read your blog and were not idiots.
I do appreciate the clarification in the rest of your post, though.
Actually Cort, the question should be: What CFS History are YOU reading?
It turns out you don’t have to spend a million dollars and wait 18 months to find out what the IOM recommends as treatment for CFS. they’ve already posted their recommendations in January of this year for CFS treatments. How about a little more GET and CBT?
Two specific therapies are recommended for people who have CFS: CBT and graded exercise therapy (GET) (CDC, 1994; Mayo Clinic staff, 2011; National Collaborating Centre for Primary Care, 2007). CBT provides a framework for patients to change how they think and feel about their illness and teaches behaviors that provide patients with a greater sense of control over symptoms (CDC, undated; National Collaborating Centre for Primary Care, 2007). Exercise has been associated with the body’s natural release of endorphins, natural pain relievers. Both exercise and endorphins have been shown to improve a number of the symptoms of CFS and related syndromes (Cleare, 2003; Harber and Sutton, 1984).
Based on the 1994 Fukuda. http://books.nap.edu/openbook.php?record_id=13539&page=97
Won’t it be great in 18 months?
“However, with all the ME/CFS experts backing the CCC – that should not be a problem – so long as they are included in the panel.
Can you somehow put together those two strands of thought?
A) Hopefully the contract will be repealed
B) If it is not then the next step might be……X”
I get that we need to be passionate and organized in our advocacy and not Pollyanna-ish but I have a really hard time seeing that not showing up at all is a good way to be heard. After all, have the experts said they won’t be on the panel, or that they don’t think we need a new definition?
Thanks, Darlene – but where I did suggest we not show up at all?
You didn’t 🙂
Sorry I wasn’t more clear, I think that IF there is a panel we need passionate advocates on it, not boycotting it.
This is clearly a political move on the part of the HHS. If they were sincerely interested in resolving this, they would take the 1 million and spend it field testing the existing consensus criteria using a multi-site model similar along lines as was done with XMRV. IOW, test the diagnosis against actual patients. Having non experts form a consensus about an expert consensus in the name of impartiality is idiotic. It is like me going to a doctor who is not a cancer expert to get a second opinion about my cancer, in the name of objectivity. It makes zero sense.
How many times before has the patient community been seduced into supporting a government effort, and how many times did they end up not screwing us. I cannot believe that people with a knowledge of history are falling for this one more time.
Very well stated Andrew – right on!
There are a couple reasons, Andrew why your theory sounds good but would not pan out in DC.
The first is that you assume a priori that they’re going to choose the consensus criteria..Most processes like this get their validity from starting from ground zero… ie looking at all the alternatives in an objective fashion and then choosing…
A study is involved – we don’t know it entails. I honestly don’t think a study is necessary; for all the angst and fear this issue has produced, this is about producing a doctor’s definition; it’s about how to describe this disorder to doctors. It doesn’t say anything about what causes ME/CFS or what it is – I don’t see why that’s a particularly difficult.
With the work done by ME/CFS experts to come up with a similar way of describing ME/CFS, I would be surprised if a group came up with something very different.
What other government efforts have patients been seduced into supporting? Except for the Media campaign – which happened years ago and the CFS community did not support – I can’t think of any efforts.
Whoops – There was the State of the Knowledge Workshop – that turned out really bad. Oh, yes, there was the Neuroimmune Workshop before that- another tremendous loser.
Just what government efforts has the ME/CFS community been seduced into supporting?
What a complete croc, excuse my French.
ME/CFS Patient community has a thirty-five year historical record of destruction involving the death of many patients. The ME/CFS Patient community has a thirty-five year historical record of patients suffering extreme pain, debilitating exhaustion, careers ruined, families torn apart, marriages failing, finances destroyed and hope extinguished.
The ME/CFS Patient community has a thirty-five years historical record of being marginalized, ridiculed, and treated with the utmost disdain and arrogance by the medical community. The ME/CFS patient community has seen its funding stolen and used for other programs.
The ME/CFS Patient community has a thirty-five year historical record of the actions by HHS and its agencies the NIH, CDC in how they treat this community.
We have seen their smoke and mirrors of mixing cohorts in research to create a psychogenic disorder. There is no more trust with HHS. It is not up for us to trust them anymore. It is up to the HHS to prove by their actions going forward from this moment on, to trust them!
But instead, we have the contract cancelled and then renewed behind out backs, accelerating the process in secrecy and using the divide and conquer techniques among our ‘patient advocacy’ groups. We cannot trust them. We refuse to trust them. The onus is on HHS to prove they can be trusted.
There is a huge difference between nominating someone as though we have a say in the process (the dog and pony show) and who is actually nominated on the panel. We have already seen one of their choices.
In the VA IOM situation, they threw away the SOW, disregarded the expert scientific evidence from the Congressional mandated Research Advisory Committee, and disregarded expert testimony, basically nullifying the contract between the VA and IOM Panel.
Ask yourself, after all the t’s are crossed and i’s dotted, who will enforce the contract if it’s broken? You? HSS? The Justice Department? Good luck with that one. Oh, but they will have their hearings on the ‘Hill’ but the damage has already been done.
Makes you wonder since they are including NICE will they also bring in the PACE trial as evidence of successful therapy. Now, that’s a concern everyone should be worried about. There are other forces at play here, Medical/Health/Disability Insurance lobbyists and the APA. They aren’t sitting on their hands on this one.
And one more thing, HHS does not set the agenda of the CFSAC, we do. No more testimonies over how bad this illness is. They have years of knowing the ravages of this illness.
The CFSAC agenda has only ONE agenda, the Rescission of the IOM Contract. If they don’t agree, walk out and boycott the meeting. We are the ones that need to reframe the argument not the HHS. A Mass, Tom
There’s the History I’m talking about! The dishonesty and condescension by the government agencies is still astounding. I think the 50 experts might as well drop the CFS in ME/CFS while they are at it!