Release of the IOM report - live webcast-2/10/2015

[August59]

It will take Medicare 5 years to even begin to start paying for a mere portion of the testing required, or should I say "medically necessary"

 

[alex3619]

It is a little concerning that Simon is somewhat on board.

Possible Simon plan:

1. Approve but make a minor contrary point.
2. Later on say some good things, then list a few major disagreements.
3. Then say it was a nice try, but they got it wrong, and I am right.

 

[Nielk]

That is a failure of the original scope, of a badly researched question. I am not sure this report was ever intended to cover that question.

It's true. they were bound by the parameters and charge. Still, I would have like to see a recommendation for that.

 

[user9876]

I am furious about Wessely's role all along.

Of course he will say he "welcomes" the report because he is not going to stake out a position against it. But notice the word. Who is he, the Queen, or King, to welcome something or not? Is he the host, the judge?

Wessely is essentially political and keeping himself in the game. At the same time, he immediately starts muddying the waters, casting doubt, sowing confusion himself by "fearing" it will create confusion. He does not say how. He does not because he cannot. There is no confusion that I heard today in the IOM presentation. It is extremely clear. It is a somewhat simplified, streamlined version of the CCC as a definition. Further, it is not necessary to be an exclusive diagnosis. That further reduces contradictions, confusion and difficulty for doctors.

Wessely has created a position and career for himself on our backs, on top of the weak. He will try to stay in the game in a position of power. He is a case study in neurosis in my very experienced opinion, if not something considerably worse.

The report basically treats Wessely and his work as irrelevant. The name itself suggests the treatments he has been pushing are wrong and harmful (or at least not beneficial). I suspect he and the SMC will be doing the rounds to rubbish the report behind the scenes. We should remember that the P2P report was quite damning of PACE.

 

[August59]

Well, exercise intolerance isn't specific either. I am concerned that now that pain has been relegated to minor symptoms physicians trained on this new disease definition will under-treat pain because surely it can't be that bad and the patient must be exaggerating/drug seeking.

Bingo!!!

 

[Valentijn]

Well, exercise intolerance isn't specific either. I am concerned that now that pain has been relegated to minor symptoms physicians trained on this new disease definition will under-treat pain because surely it can't be that bad and the patient must be exaggerating/drug seeking.

Everyone has pain at some point. It's almost as useless as "fatigue". Whereas exercise intolerance is pretty uncommon, albeit more common that PEM. If part of their goal was to keep a short definition (4/5 symptoms), then I think they prioritized fairly well.

 

[CBS]

Simon Wessely at King's College London welcomes the criteria, but is less convinced by the name-change. "I'm concerned it may add to, not reduce, confusion around this condition," he says.

I suspect the bit he finds bothersome is a shift from "syndrome" to "disease."

 

[alex3619]

Oh, are we having a big news day? Every time I look up my new post alert has incremented. Its now up to 47, and still climbing.

 

[Sing]

The report basically treats Wessely and his work as irrelevant. The name itself suggests the treatments he has been pushing are wrong and harmful (or at least not beneficial). I suspect he and the SMC will be doing the rounds to rubbish the report behind the scenes. We should remember that the P2P report was quite damning of PACE.

THANK YOU!

 

[A.B.]

Does anyone know if the fluctuating nature of the illness is acknowledged in the full report? This seems to be common characteristic and is important because it can confuse the patient and doctor. A patient might wrongly believe that they are recovering, that a treatment helped or that it's not as serious as it first seemed. Also because it resembles some autoimmune illnesses in this regard.

 

[Sing]

Does anyone know if the fluctuating nature of the illness is acknowledged in the full report? This seems to be common and an important because it can confuse the patient and doctor. A patient might wrongly believe that they are recovering, that a treatment helped or that it's not as serious as it first seemed. Also because it resembles some autoimmune illnesses in this regard.

Yes, I heard Dr. Clayton mention this point.

 

[Sidereal]

JAMA editorial: http://jama.jamanetwork.com/article.aspx?articleid=2118591

Viewpoint | February 10, 2015
Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
An IOM Report on Redefining an Illness
Ellen Wright Clayton, MD, JD1
[+] Author Affiliations
JAMA. Published online February 10, 2015. doi:10.1001/jama.2015.1346

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a multisystem and often long-lasting disorder, with manifestations that can cause substantial morbidity and can severely impair patients’ health and well-being. It is estimated that between 836 000 and 2.5 million individuals are affected in the United States.1,2 Patients with ME/CFS are typically unable to perform their normal activities, and as many as one-fourth are homebound or bedridden, sometimes for extended periods.3 As a result, the personal and social effects and ramifications of this disease are enormous.

However, ME/CFS is poorly accepted and poorly understood, and the characteristics necessary to make the diagnosis are contested. Patients’ concerns are often met with dismay and skepticism, if not outright dismissal. Clinicians, in turn, are confronted by competing definitions, which were usually developed for research and are quite complex and difficult to implement in a busy clinical practice. Patients who are fortunate enough and persistent enough to receive a correct diagnosis frequently report long delays before their disorder was identified. It is almost certainly the case that the majority of affected patients are never diagnosed. This is unfortunate because effective symptom management is often available, whereas the wrong interventions can make symptoms worse.

Read more here.

Surreal seeing an article about this illness in JAMA.

 

[Mary]

I find it hard to believe that pain isn't a prominent symptom for the majority of us.

I don't have any pain, but I have had PEM and impaired immune system, screwed up sleep etc. for 17 years. It'd be interesting to know what percentage of us have pain and how many don't.

 

[Mary]

You know, the name AIDS all by itself sounds pretty innocuous. Without its history, one would not have a clue that it is the devastating illness which it is. So though the name SEID is rather clunky and not perfect by any means, I think it's a giant step forward from CFS and may help earn this disease the respect, and thus research money, it deserves.

I was afraid to see the results of the report. I knew it was coming out but expected the worst so I am happy!!!! with the report, with all its flaws.

 

[Sidereal]

A couple of comments about the JAMA editorial...

whereas the wrong interventions can make symptoms worse.

Like what, CBT/GET?

The new name, which should be accompanied by a new International Statistical Classification of Diseases and Related Health Problems, Tenth Revision (ICD-10) code, also distinguishes this definition from previous ones.

I wonder what ICD-10 section this will fall under.

 

[Anne]

Exercise intolerance is a well-documented problem in many diseases, especially mitochondrial ones. There's no suggestion of a lack of effort.

But isn't exercise intolerance different from PEM, in that exercise intolerance means you are unable to exercise (can't carry out the task) but PEM is a delayed patophysiological response which means you might be able to climb the stairs but you'll be ill for days afterwards?

 

[August59]

I don't have any pain, but I have had PEM and impaired immune system, screwed up sleep etc. for 17 years. It'd be interesting to know what percentage of us have pain and how many don't.

That would be a good poll! Not sure how quantify the "pain" though? The need for drugs beyond acetaminophen and/or ibuprofen? Oral, injections of steroids? Need for physical therapy?

I've had them all. Pain medications included everything from tramadol all the way to fentanyl 100mcg patch every 48 hours plus 90mg of oxycodone for breakthrough pain. I've been on this roller coaster ride 4 times since 2005 and I'll ride it again. Thankfully, I'm not taking anything but ibuprofen for the last 6 months however I'm housebound due to pain right now. I walk to my mailbox twice a week (100 feet) and on occasion been unable to make that due to myalgic pain.

 

[CantThink]

I find it hard to believe that pain isn't a prominent symptom for the majority of us.

At the (UK) CFS clinic I attended, the consultant told me that the chronic, (severe) pain I am in is not reported by other CFS patients at their clinic, and that it was therefore linked to my other health problems. I was surprised as chronic pain has always been an issue for me since getting sick with M.E.. It would definitely be in my top symptoms.

 

[alex3619]

Does anyone know if the fluctuating nature of the illness is acknowledged in the full report? This seems to be common characteristic and is important because it can confuse the patient and doctor. A patient might wrongly believe that they are recovering, that a treatment helped or that it's not as serious as it first seemed. Also because it resembles some autoimmune illnesses in this regard.

Yes, its covered, but I don't know to what depth yet.

 

[Sing]

But isn't exercise intolerance different from PEM, in that exercise intolerance means you are unable to exercise (can't carry out the task) but PEM is a delayed patophysiological response which means you might be able to climb the stairs but you'll be ill for days afterwards?

I agree with you about the implications of these different terms, but I know there will be a section in the report detailing what is meant. I haven't read this yet so don't know how they describe it.