Problems with the new IOM criteria

[Nielk]

@Nielk, a major problem is that your opinions about this are not universally shared. So if the community is split, then where do we go from here?

I understand that this is a problem. I am not unique in my view though. It seems like it here on PR but if one looks at the community at large there are large groups of patients and advocates who feel this way. My attempt here is to explain our reasoning. I am not saying that anyone has to agree with me. This is our view.

We are not in opposition because we love to be contrary, to complain and to deride. We do want to stand up for our rights and we feel that our disease has been hijacked.

 

[snowathlete]

have Jason's findings been replicated?

I'd have to check to be sure, but I'm not sure which source I am talking about. I don't think they were findings per se, but rather an analysis/review of existing criteria. The IOM report certanly took evidence in this area from several studies not just L Jason’s work, but I'd have to look quite in depth at this to know what overlap there is.

 

[snowathlete]

@Amaya2014 - I get OAP envy too. All the time.

 

[Bob]

The issue for me though is really, which disease is the IOM describing? Is it the disease that Dr. ramsay described in the 1950's or the syndrome described by the CDC in the 1980's? There is in my opinion a big difference. Dr. Ramsay's M.E. is much more exclusive. I would venture to say that only a fraction of patients diagnosed with Fukuda, actually suffer from M.E.

Personally, I think the new criteria reflect the latest evidence (or which there is very little) rather than attempting to build on either Fukuda or the ICC. I think they started with a fresh slate. If you are arguing that they should have considered evidence relating only to Ramsay's ME (i.e. using the ICC to select patients), the major problem is that there is practically no research that has used the ICC. So I don't know how you would circumnavigate that problem, except for the authorities to adopt the ICC, perhaps with the CCC used as a stepping stone. But, however much we protest, I believe we're never going to convince the authorities to adopt the ICC. And not all of the community want the ICC adopted. (Most of us probably haven't even read them, or can't remember what they contain.) For those who want the ICC to be adopted, I don't know what to suggest as a way forwards.

 

[Bob]

I am not unique in my view though.

I know. I've reworded my earlier post to acknowledge that your views are shared by others. The point that I was making is that our community does not have a single view about the best way forward. Some are utterly dissatisfied with the new criteria, but others see them as very helpful.

(BTW, if I'm taking this thread off-topic, then please say so, and we can drop this discussion or move it elsewhere.)

 

[Scarecrow]

If the IOM criteria is capturing everyone including all criteria, then I would like to see where the scientific basis is for calling it a "disease" instead of a "syndrome".

The meaning of 'syndrome' is a lot tighter than most assume. Think AIDS, Down's, Marfan. They are diseases / conditions with a single cause that produce a set of symptoms often seen together. CFS, bizarrely is almost certainly not a syndrome but M.E. may well be!! (If there is a unique cause.)

As I posted elsewhere, I'm still struggling to understand exactly what a disease is.

 

[Bob]

For those who want the ICC to be adopted, I don't know what to suggest as a way forwards.

I think I'd be happy for the CCC or ICC to be adopted by the authorities to be used alongside the new criteria. Perhaps that could be a solution that suited all of us? I can't see it happening, but it's something that I could support if others were advocating along those lines. (I'm trying to think of potential solutions that might bring us all together rather than dividing us.)

 

[Nielk]

Dr. Bateman in her comment on the IOM for the M.E. Global Chronicle stated:

I don't recall anything in the IOM report that states the term Myalgic Encephalomyelitis, or ME, can not be used to describe someone who meets published ME criteria. The recommendation is stop using ME/CFS.

I don't know what she meant by that. I think I am going to include it as a question to the panel member who will be answering our questions for a PR article.

 

[adreno]

I fit the SEID criteria, but probably not the ICC. So, if ICC had been adopted as defining criteria, I would now be without anything describing MY illness. So it goes both ways.

I have always believed that CFS was a heterogeneous disorders, with many different causes (subsets), and I still believe that about SEID. Whether ME exists as a discrete, infectious disease in its own right, I just can't say anything about, I'll leave that to the experts.

I would be fine with the ICC being defined as ME - a subset of SEID. However, I would not be fine with the ICC being the ONLY criteria, as that would leave me without an illness. There has to be room for us both.

 

[Snowdrop]

I'm wondering. Are there any people here who only have the symptoms that are listed in the IOM criteria and no other symptoms?

My problem still is that although some symptoms may indeed be general (in that they are also symptoms of many other illnesses)
I'm not sure but I think it may be correct to say that in those other illnesses those symptoms are necessary or that although a whole lot of symptoms we experience are part of other illnesses the other illnesses have a much more limited list of symptoms in total.

I'm sorry if I'm not being very clear. What I want to convey is that diagnosis of our illness should show that we have many things going on. A menu of things that are not central but that we all experience some of in the course of being ill. Whereas with other illnesses there are some of these symptoms also but not such a variety or so many experienced.

SEID doesn't seem to capture enough to limit the illness diagnosis to only people with ME type SEID. I guess it all comes down to needing to be able to objectively measure PEM. Even with the CPET (if you could use it quite widely) it's problematic because you don't want to put very ill people through that.

 

[user9876]

Note that, in the IOM criteria, in the table where they have operationalised the criteria (page 216), a two-day CPET test is recommended to measure PEM. So they are describing a specific biological process for PEM, not simply tiredness after exercise. Although, I acknowledge that family doctors won't be particularly discerning when it comes to identifying PEM.

This worries me as I'm concerned about making people worse and causing relapses with the two day CPET test.

 

[Bob]

This worries me as I'm concerned about making people worse and causing relapses with the two day CPET test.

It does say that the test can severely exacerbate symptoms, and suggests that the test may be useful for obtaining Social Security Disability...

Two cardiopulmonary exercise tests (CPETs) separated by 24 hours that demonstrate marked inability to reproduce maximal or anaerobic threshold measures on the second day; values on the second CPET must be much lower than those on the first CPET (note that this test may induce severe exacerbation of symptoms in these patients); 2-day CPETs are not required for diagnosis, although they may be needed for other reasons, such as obtaining Social Security Disability

 

[Bob]

I'm wondering. Are there any people here who only have the symptoms that are listed in the IOM criteria and no other symptoms?

I think that would be me for the first eleven years of my illness. I had exhaustion, brain fog, and flu-like malaise all the time, which were all vastly exacerbated by exertion. Hmm, I also had tender lymph nodes and white spots on my tonsils. I think that was the extent of my symptoms.

 

[user9876]

I understand that this is a problem. I am not unique in my view though. It seems like it here on PR but if one looks at the community at large there are large groups of patients and advocates who feel this way. My attempt here is to explain our reasoning. I am not saying that anyone has to agree with me. This is our view.

We are not in opposition because we love to be contrary, to complain and to deride. We do want to stand up for our rights and we feel that our disease has been hijacked.

I tend to think that without a good understanding of mechanism or at least a more detailed understanding of what is happening in the body any criteria are quite arbitrary. So whether its SEID, CCC, ICC or even CDC I think there are two important things. Make sure other diagnoses are considered first and don't remove patients. I worry that ICC and CCC tend to produce a too tight classification but without a mechanistic justification. Research criteria should be entirely different.

One of the things I liked about this report was the expectation or hope that these criteria would be superseded in the next 5 years with ones based on better evidence. To my mind this means a lot more research but gives hope for much better criteria. One strategy with this report is to push in this direction and try to ask the questions around what research should be done to lead to better criteria based on better evidence.

 

[snowathlete]

This worries me as I'm concerned about making people worse and causing relapses with the two day CPET test.

page 216 of the report states:

(note that this test may induce severe exacerbation of symptoms in these patients); 2-day CPET's are not required for diagnosis.

So good it is not a requirement. I couldn't handle a 1 day CPET let alone a 2-day. That's the problem with the CPET tests, they are great for proving it but they also break patients, and that is if they are well enough to take the test in the first place.

 

[melamine]

I don't know why it is so hard for anyone to call it Chronic Neuroimmune Dysfunction.

Chronic Neuroimmune Dysfunction sounds more pathological to me than Systemic Exertion Intolerance Disease (lazy man's disease), and I don't have a problem with it as a defining characteristic, but I believe a symptom-associated name will remain problematic for many of us.

Also my understanding of unrefreshing sleep would not be trouble sleeping well, that is a different issue, it would be if you have a bad day go to bed feeling really crappy and sleep perfectly well but do not feel right as rain in the morning rather still feel about as crappy as you did when you went to sleep.

There will always be a problem using "feel" as a diagnostic criteria.

 

[Snowdrop]

I think that would be me for the first eleven years of my illness. I had exhaustion, brain fog, and flu-like malaise all the time, which were all vastly exacerbated by exertion. Hmm, I also had tender lymph nodes and white spots on my tonsils. I think that was the extent of my symptoms.

Looking back on those years how would you describe your illness at that time in terms of mild/moderate/severe?
I'm wondering if it's possible that it could be considered mild and therefore if the IOM criteria are used how will this seem to Dr's and what will they make of people who come to them with a multitude of symptoms.

I think the point was made that these are not research criteria but I don't think that excludes them from being used that way. In which case I think that it will capture mild illness. I could be wrong of course. But if so, I feel that it is the more severe cases that really need to be researched to get a handle on what this illness is.

 

[Nielk]

Thre is a poll going on Myalgia a a symptim. So far 82% state they suffer from myalgia. That is pretty high.
http://forums.phoenixrising.me/inde...-myalgia-muscle-pain.35727/page-3#post-562414

 

[Nielk]

I find it hard to believe that O.I. Is more prevalent than Myalgia.

It seems to me that they were trying to stay away from symptoms that would support the name Myalgic Encephalomyelitis.

 

[Mij]

I'm still confused as to what is considered mild, moderate or severe. Dr.Patient based it on the activity levels and not symptoms.