Blog: "My Comment to MEAction’s #MillionsMissing Protest Demands"

[Nielk]

I want to point out that the CCC and ICC are criteria created by our experts - who really intimately know this disease by studying it and treating it for decades.

As far as what would happen to patients who have been diagnosed with CFS but don't fit hear criteria, they should be grandfathered in with the ME group so that they don't loose their disabilities. Of course, they should be treated for their symptoms and they should be tested to see whether they actually suffer from a different disease.

This is the same issue as what should happen with CFS patients who have been diagnosed with Fukuda but don't suffer from PEM.

I'm sure that everyone is keenly aware of the problem of faulty criteria (Oxford) used to select the cohorts for the PACE trial.

There are similar problems in the US. The CDC has and continues to refer to the Reeve's criteria which is very much the same as the Oxford.

Even though AHRQ has made a statement at the end of their report that they are removing studies using the Oxford criteria from their P2P report, doesn't mean that the other agencies have removed the Oxford or the Reeve's.

In my opinion, first and foremost, we need to identify what disease are we talking about?

Jason and Frisk have looked at the IOM criteria and compared them to the Fukuda, CCCand ICC. They both came to the same conclusion that the IOM criteria select a broader cohort. Jason says that due to the fact that there are no exclusions with the IOM, it selects 3x the size of Fukuda cohorts.

The IOM report was based on studies using faulty criteria. In addition, the panel was tasked to create easy criteria that can be used by any medical practitioner.

This over- simplification of a complex disease resulted in an overly broad definition.

 

[Esther12]

I want to point out that the CCC and ICC are criteria created by our experts - who really intimately know this disease by studying it and treating it for decades.

They're not mine. I don't have experts I trust on this.

 

[Glycon]

the majority of the community prefers the name Myalgic Encephalomyelitis (ME) over CFS, ME/CFS or SEID and selects the CCC and ICC criteria over the IOM criteria.

MEAdvocacy doesn't take a productive approach to pretty much any issue.

Their website certainly gives off the impression of being run by someone rather... unhinged.

I stated that the voices of those who advocate for ME per the CCC and ICC was not considered on the same scale as those who have differing views.

I want to point out that the CCC and ICC are criteria created by our experts - who really intimately know this disease by studying it and treating it for decades.

"The Community" has its own experts now?!?!

They normally express the same views that you're expressing regarding name issues, so I just wondered if it was you?

OWNED

 

[TiredSam]

OWNED

I'd just like to disassociate myself from that comment. I thought it might be Nielk so asked her, she said it wasn't and I accept that.

 

[halcyon]

if you changed, overnight, everyone's diagnosis from CFS to ME who actually has Ramsay ME, I question what that would mean for people whose entire medical lives are based on the CFS diagnosis, whose disability and other benefits exist solely because of that diagnosis. People want an ME diagnosis? That's what your anon has written, millions of times. But what good is it going to do in the US where nobody knows what it is? Get you kicked off disability and unable to have insurance pay your medical bills, as likely as anything else, I'm afraid.

That's completely inaccurate. For disability purposes, SSA considers ME a subtype of the wider CFS group. They recognize and accept both CCC and ICC in addition to Fukuda.

 

[JayS]

I suppose you've never heard the horror stories of those who have gone into SSDI hearings armed with anything & everything one could hope to have to accurately prove severe disability, only to have to deal with a judge issuing a decision based on the reports of the SSA in-house doctors who, for whatever reason (though some are told it's because they don't believe in CFS), deny. It's anecdotal, sure, but I've heard more than my share. And that's not even taking into consideration how it would be interpreted that SSA accepts CCC or ICC (and honestly this is the first time I've ever heard that). If we know--or at least can strongly suspect, based on anecdote, that there are and have been problems based on CFS which they are absolutely supposed to accept--Fukuda CFS--then I'm afraid I don't have a lot of confidence that people who 'don't believe in CFS' are going to all of a sudden accept CCC and/or ICC.

 

[Denise]

fwiw (and for those who aren't familiar with it) from the 2014 SSA ruling

"INTRODUCTION:
CFS is a systemic disorder consisting of a complex of symptoms that may vary in frequency, duration, and severity. In 1994, an international panel convened by the Centers for Disease Control and Prevention (CDC) developed a case definition for CFS that serves as an identification tool and research definition.[2] In 2003, an expert subcommittee of Health Canada, the Canadian health agency, convened a consensus workshop that developed a clinical case definition for CFS, known as the Canadian Consensus Criteria (CCC).[3] In 2011, a private international group developed guidelines, known as the International Consensus Criteria (ICC),[4] for diagnosing myalgic encephalomyelitis (ME).[5] Members of this international group and other medical experts consider ME to be a subtype of CFS.[6] We adapted the CDC criteria, and to some extent the CCC and ICC, when we formulated the criteria in this SSR.[7]"

https://www.ssa.gov/OP_Home/rulings/di/01/SSR2014-01-di-01.html

 

[JayS]

I should add--I have an ME diagnosis, for all the good it has ever done me. It's virtually useless. It might be of some use if I wanted to put a Hummingbird pin on and say to people 'I have an ME diagnosis, you only have a CFS diagnosis.' Is that harsh towards Hummingbird? I feel as badly as anyone that Jodi passed away, but that was a consistent attitude I saw from her, that site, and posters like the one I mention who in my view can't see the forest for the trees.

@Denise--I saw this as I was typing. That's great! Good luck if you run into the people in the system who don't believe Fukuda is valid, regardless of the guidelines they're supposed to follow! Hopefully this is a minority of applicants, and hopefully it's becoming less and less as time goes on. But like I said, I am not exactly optimistic.

I'd love to see a real survey on how many physicians actually 'believe' this is a physical illness that can cause the symptoms and disability we know it can. Look at the comments, presumably from medical professionals, on any ME/CFS-related article on Medscape in the past few years. Ditto to the comments on stories in the lay press, though of course there it's a little less likely they're actually coming from medical professionals. Nevertheless, I think what we have here is a Catch-22. I'm conflicted in arguing for the name--it's obvious. Jen Spotila changed the name of her blog, and that means something to me. My only reservation is that it could have some nasty unintended consequences, and I'm not sure it should be the priority while we still have absolutely zero regarding a consensus on criteria.

 

[Denise]

@Denise--I saw this as I was typing. That's great! Good luck if you run into the people in the system who don't believe Fukuda is valid, regardless of the guidelines they're supposed to follow! Hopefully this is a minority of applicants, and hopefully it's becoming less and less as time goes on. But like I said, I am not exactly optimistic.

@JayS I understand your wariness about disability approval. For reasons I can't really understand the decision process is not uniform from one state to another or even within the same state.
That said I know people on SSDI across the spectrum - people who were approved in less than two months and people who had to appeal/hire attorneys/etc and lots in between.
And for people with limited cognitive/physical reserves, the lengthy application is arduous to say the least. I wonder if some of the problems people with ME have in getting approved is because their cognitive/physical limitations keep them from being able to generate a solid application.

It would be interesting to find out if approval rates have changed since the 2014 ruling.

 

[JenB]

We moved forward with the top level demands because they were supported as is by 90% of survey respondents. We will continue the conversation re: #MEAction USA's demands/platform after the Tuesday protest. (These are not #MillionsMissing's demands – there are a number of countries involved, all advocating for different things, and each local protest has their own messaging and focus based on their needs and strategies.)

You can find more information about the US demands + our survey here:
http://www.meaction.net/2016/09/22/us-millionsmissing-protest-demands/

And my more detailed explanation of why we move like molasses here:
https://relatingtome.net/2016/09/25/my-comment-to-meactions-millionsmissing-protest-demands/

I think there is a decent chance we'll end up incorporating a demand that clinical trials use the CCC because it is, as @Nielk says, endorsed by the majority of the community. But we can't know if that will be the outcome and we'll need to wait until we can move forward with the community input process. In the short-run, I don't think it will have any practical implication as our messaging isn't focused at that level of detail. Yes, the devil is the details but strategically, we're beginning at zero. The media are not going to report on research definitions. We aren't delivering the detailed demands to anyone. We're just asking for: research, drug trials, medical education, government commitment. We know we need a US platform that has been widely discussed. The survey was just a first step and I regret that we haven't had the capacity to move forward more quickly.

Really happy you'll be attending in New York @JayS! Introduce yourself to Terri and Stacy if you haven't already. There will be several AIDS activists speaking as well, including Jim Eigo. I think it will be a great event if the weather holds – fingers crossed!

 

[JenB]

Also, even where we disagree, can we all disavow some of the uglier stuff? The number of weird rumors floating around today is disheartening...Disagreeing with someone does not mean you need to vilify them, or accuse them of corruption, much less lie about them. (Or my biggest pet peeve – diagnosis by disagreement. If you support my opinion, you must have ME, and if you don't, you must have CFS. If diagnosis was that easy, we'd save the OMF a lot of money...)

 

[Nielk]

(Or my biggest pet peeve – diagnosis by disagreement. If you support my opinion, you must have ME, and if you don't, you must have CFS. If diagnosis was that easy, we'd save the OMF a lot of money...)

Actually, highly respected advocates have been fighting for the recognition of the neuroimmune disease ME for decades.

Mary Dimmock stated in her guest post on OccupyME the following: Which Disease is HHS Studying

What are we to conclude from all this? HHS has not committed to criteria specific to ME. HHS is not talking about the proper subgroups of ME that we all envision. HHS intends the IOM study to define criteria for the broader set of CFS conditions, with ME characterized as a subgroup. Or worse, ME becomes a subgroup of the even broader chronic multisymptom illness (CMI).

Either way, this will be a disaster that will degrade ME research and worsen the abysmal clinical care and stigma that ME patients receive today. This is the nightmare scenario that we all fear.

If HHS truly wants to reverse the chaos and the grievous harm to patients caused by years of sloppy definitions, it will first and foremost declare that ME, the disease described by the Canadian Consensus Criteria, is not the same disease as the overly broad “CFS” and should not be considered as either a subgroup of CFS or part of a spectrum of CFS diseases.

The reality of the critical importance of this has been keenly apparent with the PACE fiasco that used faulty, meaningless criteria.

You seem to scorn those who insist on the distinction between the fatigue disease CFS and the neuroimmune disease ME, yet 50 experts signed an open letter to Secretary Sebelius of HHS that they have come to a consensus in their adoption of the Canadian Consensus Criteria for diagnostic and research purposes. 171 advocates signed a letter of support of the experts' decision.

This is the decision our medical and scientific experts have made.

Would the diagnostic process be easier if we had an acceptable medical biomarker for the disease? Of course. But we are no there yet.

 

[Nielk]

From the experts letter:

As leading researchers and clinicians in the field, however, we are in agreement that there is sufficient evidence and experience to adopt the CCC now for research and clinical purposes, and that failure to do so will significantly impede research and harm patient care. This step will facilitate our efforts to define the biomarkers, which will be used to further refine the case definition in the future.

and

We strongly urge the Department of Health and Human Services (HHS) to follow our lead by using the CCC as the sole case definition for ME/CFS in all of the Department’s activities related to this disease.

 

[A.B.]

For political purposes, we want broad criteria. We cannot say that 2.5 million Americans have this illneed, that is causes this much economic damage to leave patients untreated, and that we need $250 million funding per year without using some broad criteria, because there's no way that so many patients have CCC or ICC ME.

For research purposes you want strict criteria because they make it easier to find abnormalities.

Demand SEID criteria in clinical practice, and CCC or ICC in research, with further refinement once more is known or a practical biomarker appears. That's the smart thing to do.

 

[Nielk]

For political purposes, we want broad criteria. We cannot say that 2.5 million Americans have this illneed, that is causes this much economic damage to leave patients untreated, and that we need $250 million funding per year without using some broad criteria, because there's no way that so many patients have CCC or ICC ME.

I agree the figures are inflated and based on CDC epidemiological study. These figures are based on fatigue. The IOM report picked these figures up because their study was based on CDC findings.

The actual figure of $250 million was based on one million patients - compared to MS. There are no epidemiology studies on ME in the US that I know of.

The SEID criteria have not shown to be as broad if not more so than the Fukuda. (by Jason and Twisk). I feel that overly broad criteria for diagnostic purposes is a problem. I know that some like it because it inflates the epidemiology figures. The problem is that when doctors treating SEID patients start to see improvements with specific treatments, they will recommend to all their patients - some of whom do not have from neuroimmune ME.

I recently had an ac repair guy come to the house. he was surprised to see that I could not get off my couch so he asked me what's wrong. I told him ME - some know it as CFS. His eyes lit up. He said that he had it too and has the answer for me - Dr. Sarno! Dr, Sarno believes that CFS, fibromyalgia, back pain and many other problems can be healed once one realizes that it is based on inward anger. The ac repair guy told me that he didn't even have to go for treatments to Dr. Sarno. All he had to do was read the book and he was instantly healed.

I didn't tell him that I had read Sarno's book years ago.

Edited for clarification

 

[Glycon]

For political purposes, we want broad criteria. We cannot say that 2.5 million Americans have this illneed, that is causes this much economic damage to leave patients untreated, and that we need $250 million funding per year without using some broad criteria, because there's no way that so many patients have CCC or ICC ME.

For research purposes you want strict criteria because they make it easier to find abnormalities.

Demand SEID criteria in clinical practice, and CCC or ICC in research, with further refinement once more is known or a practical biomarker appears. That's the smart thing to do.

Great post, @A.B. !

People often fail to realize just HOW restrictive the ICC really are. An acknowledgment of that is built into the notion of "atypical ME", as defined in the ICC.

 

[caledonia]

Maybe ME Advocacy's view wasn't sought, and their priorities not adopted, because there isn't wide enough support for those things among the community. Many don't see ME Advocacy's focus as representing realistic or productive goals.

The problem with advocating for "realistic" goals is that you will only get small incremental changes.

The reason is that your goals will invariably be negotiated downward. This is why you should advocate for the largest changes possible.

Just because you think you won't be able to get a large change doesn't mean you shouldn't advocate for it. You should have a vision of what you want the ideal future to look like and then try to make that happen. Why put all your energy into doing something half-a$$ed?

For example, in the US, the current minimum wage is $7.25 per hour. This is a starvation wage where a full time worker may have to use government assistance to survive.

Fast food workers started advocating for an increase in the minimum wage. The workers could have advocated for a "realistic" increase like $9 or $10 an hour. But they they didn't. They advocated for the shocking amount of $15 an hour - twice the current rate.

To cut this story short, the Democratic platform now includes raising the minimum wage to $15 an hour, and if Hillary Clinton is elected the workers' shocking goal could actually happen.

Now, what would have happened if they would have advocated for $9 an hour?

I could give many more examples, but I hope you get the point.

 

[A.B.]

The problem with advocating for "realistic" goals is that you will only get small incremental changes.

And the problem with advocating for nonrealistic goals is that you achieve nothing.

 

[Glycon]

ME Advocacy and other such "Heroic Vanguards of the Proletariat" almost always create more problems than they solve.

Their only excuse is that sickness makes people do stupid things. (I should know, I've done plenty of them myself.)

 

[BurnA]

This argument will be tough because what's realistic to one person might not be realistic to another. That's the problem. I am all for advocating for what's required regardless of who thinks it realistic or not.