Discussion of full IOM report

[OverTheHills]

In addition, I have to add that this group of opposition is very large. It comprise many king time advocates, doctors, lawyers, scientists, nurses and others.

You don't see them posting here because they don't feel comfortable/accepted here.

Thankyou NeilK for that clear and very reasonable explanation of where you stand on the issues. Its very useful to help me develop my thoughts.

I do find it very difficult to read some of the more angry posts, and I think there may be a danger of some people not taking action (letters etc) because they have been turned off the whole thing by the emotionally charged atmosphere. This would be a big loss.

I don't agree with everything you say but I am keen that you have a place here to express your views. I liked where PR got to with the P2P thing, where there were articles published expressing both points of view (protest only or address specific points) and explaining the rationale and what to do depending which side of the question you came down on.

Could it be better for us as a community if we pursue multiple strategies until it becomes clear which will have more success? I don't think we are at that point of clarity yet - I think we have justifiable fears but things are more volatile at the moment and the past may be less of a guide to the future

OTH
PS I meant to quote your whole long post but I messed up somehow. I wasn't just replying to that bit.

 

[snowathlete]

.
@snowathlete wrote:
"The name SEID is a massive upgrade on CFS. Apparently it should be called ME and there are people shouting about that, but they won't be reasoned with"


What an utterly insulting, patronising thing to say! Infantilising and insulting those who are critical of the SEID name and criteria is a bizarre and unworthy approach. Portraying as irrational the people who favour retaining ME, is beyond the pale.

I am amazed how quickly and easily some have given up on the more rigorous criteria of CCC/ICC.

PEM plus three symptoms just won't cut it.
.

Sorry you feel insulted but it's not aimed at anyone specifically, I'm just expressing my personal experience. And for clarity, I'm not talking about people who dislike SEID, I am talking about people who insist the name should be ME. I find people don't want to have a calm reasoned look at why that isn't possible based on scientific evidence.

The reality is that there is insufficient evidence for the ME label. That's not really a debatable point if people actually review the evidence, because it either is or isn't, but people who insist on ME don't want to look at that properly, I find. They just repeat over and over that it should be ME without evidence to support the idea. Some, I've found, don't even know what the words myalgic encephalomyelitis even mean.

 

[Nielk]

Sorry you feel insulted but it's not aimed at anyone specifically, I'm just expressing my personal experience. And for clarity, I'm not talking about people who dislike SEID, I am talking about people who insist the name should be ME. I find people don't want to have a calm reasoned look at why that isn't possible based on scientific evidence.

The reality is that there is insufficient evidence for the ME label. That's not really a debatable point if people actually review the evidence, because it either is or isn't, but people who insist on ME don't want to look at that properly, I find. They just repeat over and over that it should be ME without evidence to support the idea.

why is it that the authors of the ICC including Bateman found evidence to call it ME four years ago?

 

[snowathlete]

why is it that the authors of the ICC including Bateman found evidence to call it ME four years ago?

Good question to put to them. I'd ask them to specify. Id also ask them if they feel that one of the reasons the ICC was rejected was because the rest of the medical community considered that evidence insufficient. Would be interested in the answer, especially from Bateman who was involved in ICC and IOM.

 

[CBS]

Good question to put to them. I'd ask them to specify. Id also ask them if they feel that one of the reasons the ICC was rejected was because the rest of the medical community considered that evidence insufficient. Would be interested in the answer, especially from Bateman who was involved in ICC and IOM.

Not really sure how that would work out but I'd be interested in her response as well. She was also against the IOM before she was for it (but not until SolveCFS and Susan Vernon asked her to help them out of the uncomfortable position of supporting the IOM when 50 experts had come out against it (some of whom now support it. What??? - she used to be a CAA board member if I'm remembering that correctly).

Damn! keeping up with our so called experts is no small task.

 

[Bob]

@CBS, you have sleep dysfunction but many patients sleep well and deeply. You experience pain but many patients wouldn't describe themselves as experiencing pain per se, because not everyone experiences localised joint or muscle pain. Instead, they would say that they experience severe discomfort, or similar.

So I'm not convinced that the core symptoms of the CCC would be more appropriate than the core symptoms of the new criteria for a majority of us, and the core symptoms of the CCC definitely wouldn't include all of us even when we have very typical ME symptoms.

I've had two phases of my illness: in the first phase I never complained of pain to my doctor (I complained primarily of exhaustion, flu-like malaise and brain fog), and in the second phase I developed burning localised muscle and joint pain along with all the other symptoms.

And regarding OI, I know from previous discussions that there is a significant subset on this forum who suffer from pronounced OI issues, so I expect they will be very pleased that OI is included in the new criteria as a subset.

I agree that unrefreshing sleep is an odd one to include as a core criteria, but it is also a prominent feature of the CCC. (It's listed as an example of sleep dysfunction - the first item in the list.)

 

[Bob]

The objective should be more accurate diagnoses, and to reduce misdiagnoses, not to increase the number of diagnoses by reducing the range of symptoms required. In addition, very disabling symptoms that are not on the SEID list will likely tend to be ignored or underplayed by doctors who have no other background in this disease than the IOM criteria.

I'm sympathetic to what you've said here, except I think that people can have mild ME, and not experience all the symptoms. Many of us have fluctuated between mild/moderate/severe and can attest that our symptoms change over the course of the illness. So i think we would need criteria that catered for the vastly different cases of ME. So I think we may need a fairly inclusive set of criteria or a graded set of criteria that can distinguish mild/moderate/severe cases. The latter would perhaps be very useful. Would that have satisfied your requirements, do you think?

 

[Cheshire]

I believe that the criteria are way too simplistic, does not describe the true disease and therefore will be way too inclusive. The CCC which we have fought for demands more symptoms - some neurological, neuro endocrine and immune symptoms. I believe that those are needed in order to properly diagnose the RIGHT cohort.

About PEM - It is true that PEM is unique to ME/CFS. It is true that we have fought for it and when I read that PEM was included and mandatory I was very happy. But, when I saw that there are only 3 other symptoms needed and they could be attributed to so many problems like depression or insomnia, I panicked. The reason I panicked is because we do not yet have a reasonable way to objectively test for PEM that is safe for patients. So, it remains a subjective symptom. If diagnosing would be left to specialists who are especially trained to recognize true ME PEM, I would not be as worried, but, i have no faith that GPs who see patients for less than 6 minutes will be able to detect true PEM.

I agree that PEM is still a subjective symptom as we do not have an easy and safe way to test it. Diagnosing it is a very difficult thing for people who are not familiar with it. I would also love to see numerous specialists well trained to handle us.
But I don't think it's realistic just right now.
How many physicians are specialized in the field in the USA?
How many in my country? NONE.

We can't wait for specialists to be trained. In my country, I can't wait for the field to emerge from nothing. I have a GP who believes I have an organic illness, I can work with him. If he had operational toolkits, that wouldn't be as great as being followed by a specialist (wayyy beyond), but that would be much better than the current situation.

If we refuse to train GPs, then the vast majority of people will be left on the side of the road for many years. And the lucky ones, who have money and knowledge, will have access to the few specialists. That seems unfair.

Another solution that you propose is to add other mandatory symptoms to the criteria.

So what do you do with people like me?
I have PEM, that you consider to be unique to ME/CFS, therefore I might have it.

But at the same time, I do not have pain, that some want to be mandatory, so I wouldn't fulfill that type of criteria while at the same time having PEM which is unique to this disease?
I'd be nowhere again... while suffering from PEM.

If PEM is unique to ME/CFS, then I think it is strong enough as a diagnostic criteria to distinguish ME/CFS from other diseases.

So yes, I think to help the more people NOW, we should accept that PEM is a core symptom, with not too much mandatory symptoms to help identify the vast majority of ME/CFS sufferers and help them escape from the darkness, ignorance and bad treatment they are confronted with.
Yes, GPs should be diagnosing people as there are not enough specialists.

And NO, that is not at all an ideal situation, I'm not happy with it. I'm not naive, there are huge issues with such a situation.
The toolkits have to be very carefully made, and be very specific in the way they describe PEM.
They won't prevent some GP from misdiagnosing.
They won't convince those dismissive MD that think we are only delusional, neurotic, weak people unable to face simple life stressors.

But as long as we do not have a biomarker for our disease the situation will be blurred.

And meanwhile, we should do the best to help more people suffering from this disease, and not wait for an ideal situation to come.


(Sorry for my English, I'm really foggy today...)

 

[lycaena]

It is possible to get a ME/CFS diagnosis without pain according to the CCC.
"There is a small number of patients who have no pain or sleep dysfunction,
but no other diagnosis fits except ME/CFS. A diagnosis of ME/CFS can be entertained when this group has an infectious illness type onset."

 

[MeSci]

The reality is that there is insufficient evidence for the ME label. That's not really a debatable point if people actually review the evidence, because it either is or isn't, but people who insist on ME don't want to look at that properly, I find. They just repeat over and over that it should be ME without evidence to support the idea. Some, I've found, don't even know what the words myalgic encephalomyelitis even mean.

But ME does not have to stand for myalgic encephalomyelitis. It can also stand for myalgic encephalopathy or myalgic encephalitis.

 

[MeSci]

there's something i'm really struggling to understand right now, and i'd appreciate it if someone could help clear up the confusion.

not long ago it seemed to me like "everybody" was pushing for PEM to be the focus as well as a required criteria; arguing that it's the one thing that's unique to PWME, and would help solve the problem with ME getting confused with general chronic fatigue, depression, deconditioning, mental health issues etc.

then suddenly the winds seemed to somehow change, and the impression i'm getting at the moment is that lots of people are now arguing that PEM isn't unique enough/at all (??), and therefore the suggested criteria are useless.

what happened? what am i missing?

I too am puzzled over this. I just did a quick word search of the IOM report for 'malaise', and there is a whole section on PEM. Re whether it's unique, this bit may be of interest:

The existence of PEM can help physicians confirm a diagnosis of ME/CFS earlier rather than only after extensive exclusion of other conditions.
Several studies have found that PEM best distinguishes ME/CFS from idiopathic chronic fatigue (Baraniuk et al., 2013; Jason et al., 2002a) and may help distinguish it from other fatiguing conditions with a lower frequency
of PEM, such as multiple sclerosis and major depressive disorder (Hawk et al., 2006a; Komaroff et al., 1996b).

I am sure there is a lot of other useful stuff in there but I don't have time to search for long at a time.

 

[Sidereal]

The ICC cites no evidence for the presence of encephalomyelitis. It just says this:

In view of more recent research and clinical experience that strongly point to widespread inflammation and multisystemic neuropathology, it is more appropriate and correct to use the term ‘myalgic encephalomyelitis’ (ME) because it indicates an underlying pathophysiology.

Lots of diseases are characterised by "widespread inflammation and multisystemic neuropathology". Having inflammation (-itis) does not equal encephalomyelitis. Why some people continue to insist on this name is unfathomable to me.

 

[snowathlete]

But ME does not have to stand for myalgic encephalomyelitis. It can also stand for myalgic encephalopathy or myalgic encephalitis.

True, and the MEA (if I remember correctly) think one of those should be used. But most people still mean myalgic encephalomyelitis when they say ME. Given that is how most people interpret ME I think people meaning something else need to ensure they are not misunderstood by being extra specific about what they are saying.

 

[Nielk]

Dr. Bateman commented on the IOM and stated the following - http://forums.phoenixrising.me/inde...comments-on-the-iom-report.35692/#post-560873

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.

 

[Cheshire]

It is possible to get a ME/CFS diagnosis without pain according to the CCC.
"There is a small number of patients who have no pain or sleep dysfunction,
but no other diagnosis fits except ME/CFS. A diagnosis of ME/CFS can be entertained when this group has an infectious illness type onset."

Yes, I know, I was not refering to the CCC, but to some people who were saying pain should be mandatory.

 

[Wally]

I have not been able to keep up with all the threads/posts about the I.O.M. Report, in fact I am still reading and digesting the Report. Cognitively it takes me longer than it did before I became ill to read detailed reports etc..., very frustrating because in my former life I was a lawyer whose job was to read, write and speak with a razor like focus and be unfazed by rapidly needing to consume large volumes of material. I readily admit that those skills have been greatly hampered by this illness. However, I do try to contribute when I can to add my thoughts (even if my ability to effectively articulate those thoughts is another casuality of this illness) to some of the online topics ripe for advocacy action.

It is with that preface that I am going to cut, paste and post a comment that I wrote on another thread about the I.O.M. Report that perhaps might be useful here to to think about when discussing the Report. I also think it might shed light on why the discussion about the P2P Report might have been somewhat easier for the community to engage in because it was marked as a "Draft Report" and comments about the Report were invited by the Government/HHS. I believe the questions I have raised below may illicit why this "Report" due to both its size and how it has been presented to the Public has created a thorny thicket for the ME/CFS community to try to discuss.

Here are questions that I believe the HHS needs to address in order for the Public to understand exactly what is the status of this "Report". Perhaps these questions may also help the ME/CFS Community understand why the Report in its current form and manner of release has caused so much confusion and disagreement between people who ultimately want the same end point in this seemingly never ending nightmare of an illness.

1) What is the process that will be used (or has already been used) to adopt or reject the Report and any of its recommendations?

2) Who has the authority within the HHS to approve or reject the Report and its recommendations? If the HHS does not have this authority who does?

3) Will the I.O.M. Committee be developing guidelines for clinical diagnosis for this illness under its original contract or has or will a new contract(s) be entered into for this project?

4) Will an opportunity be provided for ME/CFS patients, supporters and other interested parties to meet publicly or privately with the HHS to discuss any concerns they may have with the Report and its recommendations, prior to the approval or rejection of the Report or any of its recommendations?

5) How and when will the HHS announce to the Public that the Report and its recommendations have been approved or rejected?

6) How will the HHS announce to the Public what steps it will take to implement the recommendations that it has approved from the Report?

7) Did the HHS (or one of the other "funders" for this contract) specifically ask the I.O.M. Committee to recommend a new name for this illness, if they should make a recommendation that the name of this illness be changed? Or was the I.O.M. Committee only asked for a recommendation as to whether or not a name change for this illness should be considered? If a specific request was made to the Committee for a recommendation for a new name for this illness, where in the contract or statement of work or other document was this request made?

8) Was the I.O.M. Committee required to arrive at a unanimous decision about the recommendations in the Report or could the Report have been issued with dissenting opinions?

9) Does the I.O.M. Committee have the ability to substantively amend its Report, prior to the end of the contract period?

Post (Reply) #3 at http://forums.phoenixrising.me/index.php?threads/iom-report-what-happens-next.35601/#post-559361

 

[CBS]

@CBS, you have sleep dysfunction but many patients sleep well and deeply. You experience pain but many patients wouldn't describe themselves as experiencing pain per se, because not everyone experiences localised joint or muscle pain. Instead, they would say that they experience severe discomfort, or similar.

So I'm not convinced that the core symptoms of the CCC would be more appropriate than the core symptoms of the new criteria for a majority of us, and the core symptoms of the CCC definitely wouldn't include all of us even when we have very typical ME symptoms.

I've had two phases of my illness: in the first phase I never complained of pain to my doctor (I complained primarily of exhaustion, flu-like malaise and brain fog), and in the second phase I developed burning localised muscle and joint pain along with all the other symptoms.

And regarding OI, I know from previous discussions that there is a significant subset on this forum who suffer from pronounced OI issues, so I expect they will be very pleased that OI is included in the new criteria as a subset.

I agree that unrefreshing sleep is an odd one to include as a core criteria, but it is also a prominent feature of the CCC. (It's listed as an example of sleep dysfunction - the first item in the list.)

@Bob - I too suffered from profound OI but not until my 14th year (about the time that PR was created)! Will patients like me have to wait 14 years for a diagnosis (or to get into a specialist)?

I agree completely with your characterization of the variation across subsets of patients. This is precisely my biggest concern with diagnostoic criteria. I am sure that a group of patients will feel like they fit the new SEID criteria better than the CCC criteria. And actually, for all concerned, that would be a good step towards subsetting but that's not wht has been proposed. The proposal is to discard the CCC in favor of a new criteria to be used on an national and likely international scale with which we have absolutely no experience. This will complicate the comparison of future and past studies (some of which do have value). It will also likely confuse doctors and worst of all, it will disenfranchise a significant group of patients who fit better into the to be retired CCC - And that's a massive mistake!

 

[Bob]

@Bob - I too suffered from profound OI but not until my 14th year (about the time that PR was created)! Will patients like me have to wait 14 years for a diagnosis (or to get into a specialist)?

Hi CBS, having OI is not a requirement for a SEID diagnosis if you have cognitive impairment. To be precise, the requirement for a diagnosis is: cognitive impairment and/or OI. So if you have cognitive impairment without OI, then you'd get a diagnosis. I take your point about developing OI at a much later stage, but I think that cognitive impairment is widely considered to be an almost ubiquitous symptom in ME. For example, "cognitive/neurological manifestations" are a requirement of the CCC.

 

[Nielk]

Historically, it is understood that diagnostic criteria need to be somewhat exclusive and there is an understanding that some will fit an idiopathic form.

For example, with Rheumatoid Arthritis a positive RA factor or anti CPP is mandatory in the criteria for diagnosis. Yet, there is a large group of RA patients who appear with all symptoms yet their lab work is negative. They are called "sero negative RA" patients. Rheatologusts will diagnose them with RA.

 

[Sidereal]

Or we could just dispose of all the other criteria and retain only the severe reduction in functional capacity combined with unusual muscle and mental fatiguability on exertion that takes a long time to recover to baseline.