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

[Anne]

Just my personal opinion, but I'm glad to see some starting to use the term "ME/SEID."

"SEID" may not be perfect, but I would much rather have a debate over which term is more productive, "ME" or "SEID," than to miss this opportunity to give "CFS" the old heave-ho.

Yes, the report says that both "ME" and "CFS" are inappropriate, but, to me, "ME" is now just shorthand for the CCC/ICC definitions, whatever their cause.

In my view (and maybe only in my view), "ME/SEID" simply says that "SEID" is certainly better than "CFS," but we're not convinced that SEID is a better definition than CCC/ICC ME.

Sure, the IOM may not like "ME," but the common usage of something like "ME/SEID" can keep ME in the game while, at the same time, moving the fight distinctly forward by saying aloha to "CFS."

I agree!

 

[Anne]

So what happens now? The HHS, CDC and NIH react to this?

And what do you think IACFS/ME will do?

(Or is this being discussed in another thread? - too much to keep up with now...)

 

[Ember]

A clean slate?

The IOM Report claims that the clinical descriptions of ME and CFS are identical in ICD-10-CM. In fact, no clinical descriptions are provided, and the two ICD-10-CM diagnoses are mutually exclusive.

The Committee goes on to explain that “ME is classified as a disorder of the neurologic system (ICD G93.3), while CFS is considered a synonym for chronic fatigue, which is classified under 'signs, symptoms, and abnormal clinical and laboratory findings, not elsewhere classified.'" They recommend:

Physicians should diagnose myalgic encephalomyelitis/chronic fatigue syndrome if diagnostic criteria are met following an appropriate history, physical examination, and medical work-up. A new code should be assigned to this disorder in the International Classification of Diseases, Tenth Edition (ICD-10) that is not linked to “chronic fatigue” or “neurasthenia.”

In which chapter would this new code appear? Would ME and CFS both remain? Jerrold Spinhirne writes:

The failure of the IOM ME/CFS committee to acknowledge the long-standing ICD code for myalgic encephalomyelitis as G93.3 in the diseases of the nervous system section of the WHO ICD means whatever disease the committee has defined, it is not ME. The committee, composed mostly of US non-experts from outside the field, wishes to create a new disease with a new ICD code, de novo, based on a literature review. This is absurd. The IOM committee lacks the standing and qualifications even to suggest such an outrageous undertaking.

 

[OneWaySurvival]

Is the following statement true?

All patients that fit the CCC definition of M.E. also have the newly proposed SEID, but not all of the SEID patients have CCC M.E.

(this would translate to there being more people with SEID than M.E.)

Then, I would be curious to test the same statement as above, only substitute ICC for CCC.

To help guide patient advocates going forward as to how to react to the IOM proposal, I would really like to know what the 50 signators of the Oct. 2013 letter to the HHS secretary think of the IOM report and proposed name change.

As an FYI, it is interesting to go back now and read the following FAQ on the HHS website regarding their rationale for pursuing the IOM contract instead of following the CFSAC recommendation. Somehow I missed seeing this before.

 

[Scarecrow]

The IOM Report claims that the clinical descriptions of ME and CFS are identical in ICD-10-CM. In fact, no clinical descriptions are provided, and the two ICD-10-CM diagnoses are mutually exclusive.

The full statement in the report about the current classifications (page 50) is:

In the World Health
Organization’s International Classification of Diseases, Tenth Revision,
which will be implemented in October 2015, the clinical descriptions of
ME and CFS are identical, yet ME is classified as a disorder of the neurologic
system (ICD G93.3), while CFS is considered a synonym for chronic
fatigue, which is classified under “signs, symptoms, and abnormal clinical
and laboratory findings, not elsewhere classified” (ICDR53.82).

In fact, no clinical descriptions are provided, and the two ICD-10-CM diagnoses are mutually exclusive.

I'm puzzled by the reference to clinical descriptions, too. I understood the ICD-10 be a classification system only. I'd be surprised if there was an error, though. Are clinical descriptions to be included from October 2015? Can anyone comment?

They recommend:

Physicians should diagnose myalgic encephalomyelitis/chronic fatigue syndrome if diagnostic criteria are met following an appropriate history, physical examination, and medical work-up. A new code should be assigned to this disorder in the International Classification of Diseases, Tenth Edition (ICD-10) that is not linked to “chronic fatigue” or “neurasthenia.”

Agreed.

In which chapter would this new code appear? Would ME and CFS both remain?

Obviously, that is a rhetorical question. I can't answer it. My "a clean slate?" comment was speculative and was not intended otherwise.

Jerrold Spinhirne writes:

The failure of the IOM ME/CFS committee to acknowledge the long-standing ICD code for myalgic encephalomyelitis as G93.3 in the diseases of the nervous system section of the WHO ICD means whatever disease the committee has defined, it is not ME. The committee, composed mostly of US non-experts from outside the field, wishes to create a new disease with a new ICD code, de novo, based on a literature review. This is absurd. The IOM committee lacks the standing and qualifications even to suggest such an outrageous undertaking.

The committee did not fail to acknowledge the classification of ME under ICD G93.3. It's there in black and white. The rest of the quotation is his opinion and he's entitled to it.

 

[Ember]

I understood the ICD-10 be a classification system only. I'd be surprised if there was an error, though.

Why be surprised that there was an error? The Committee also writes, “While all of the criteria make clear that they are describing the same illness (sic), some may very in the terminology used to refer to the illness or to the symptoms.” That statement contradicts both the International Consensus Panel and the Evidence Report (December 2014).

The committee did not fail to acknowledge the classification of ME under ICD G93.3.

Jerrold explains the IOM Committee's errors concerning the IOM-10-CM classification. For the purpose of classifying their new definition, the Committee failed to acknowledge the relevance of the ME classification under ICD 10 G93.3.

 

[Gamboa]

I would like pain to be in the primary diagnostic criteria. Major symptom for me, always has been.

But I have not read the full report yet, so they may discuss that in there. (Be surprised if they don't.)

Did they mention just what research in the last ten years invalidates the CCC? If there is any, apparently everyone here has missed it.

Nothing has been invalidated as far as I know. I think that more has been discovered, primarily the evidence backing up PEM. It has only been in the past few years that the 2-day CPET protocol studies have been done showing all the neuroimmune problems and anaerobic threshold etc problems that we have. A lot more immunology research has been done (Australia) and other stuff that I can't remember know ( brain fog!).

In the 300 plus page report they go through what they looked at and explain everything.

 

[OneWaySurvival]

Anyone want to volunteer to be the "SEID Czar"? (see p245) This can't be happening.

 

[Wally]

Anyone want to volunteer to be the "SEID Czar"? (see p245) This can't be happening.

I would volunteer, but I think the Aussies may be right and we are headed for another name change. If this happens, I unfortunately will not qualify for the job because I fail to meet the equipment requirements.

@minkeygirl,
Thanks for the heads up on this information, I have already contacted an attorney about filing a class action lawsuit for all of us who fail to fit the ideal package for this position.

See, http://forums.phoenixrising.me/inde...name-for-me-cfs-vote.35450/page-7#post-557437

Just saw this in facebook. Lol

https://www.facebook.com/groups/MEAlliance/permalink/10153014836108257/

 

[Ember]

From the IOM presentation, here's Dr. Clayton's guidance for ICD-10-CM:

We also think that it's very important that there be a new ICD-10 code so that we're not stuck with benign myalgic encephalomyelitis or neurasthenia or chronic fatigue. This needs its own diagnostic criteria which will be helpful not only for these patients but frankly for the research enterprise going forward.

I'd ask whether SEID should exclude ME, but Dr. Clayton points out that SEID doesn't exclude anything.

 

[Nielk]

@Ember

Does that mean that we'll have separate codes for ME, CFS and SEID?

 

[Wildcat]

.
From the FAQs on an HHS contract with the IOM to recommend clinical diagnostic criteria for ME/CFS:

"The target audience is primary care clinicians (which include physicians, nurse practitioners, and physician assistants) throughout the U.S. Too many providers are unaware how to diagnose myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)."

Primary Care physicians (GP's) do not have responsibility for diagnosing MS, MND, Parkinsons, Lupus etc. GP's do not have the specialist skills to do that.

The 'easy to diagnose' SEID will to easly come down to a checklist of 5, creating overdiagnosis and more misdiagnoses.
.
By including only the symptoms that the IOM conclude that everyone has, the criteria have over simplified what is a fundamentally complex condition. GPs Cannot accurately diagnose ME - but they will be diagnosing SEID all over the place.
.

 

[Nielk]

The problem with GPs diagnosing us is that it will be left up to them to treat us.

Will they do the testing for virals, nk cell function, tilt table testing and others so that they can treat us with antivirals, LDN, GcMaf etc ?

The IOM report only mentions treating symptoms like sleep and pain.

 

[Ember]

Does that mean that we'll have separate codes for ME, CFS and SEID?

I don't know where they propose to have an SEID code added or whether they propose to have any other code(s) deleted.

Considering that SEID is intended to include ME patients, I'd like to think that the Committee reviewed the 2012 ME Primer. So far, I can't find anything of it it either in the text or among the references.

 

[Wildcat]

.
The IOM report will open the door to endless 'sleep studies'.

As if we need more..
.

 

[Ember]

For me one of the positives was the passion in the IOM presenters voice (conveying a sense of being appalled at what patients have endured, lack of funding, stigma, etc.)

and one of the negatives is that she tells patients to "ACT-UP" now that they have the IOM report to help.

Doesn't she know that we acted up to have the IOM contract cancelled?

 

[Kati]

The problem with GPs diagnosing us is that it will be left up to them to treat us.

Will they do the testing for virals, nk cell function, tilt table testing and others so that they can treat us with antivirals, LDN, GcMaf etc ?

The IOM report only mentions treating symptoms like sleep and pain.

I oppose to GP diagnosing and treating. It is a seriously complicated disease, we deserve proper testing and serious drug regimens. Patients should have access to 'harder' drugs such as Rituximab and Cyclophosphamide as compassionate access or trial drug and no family doctor would or could even prescribe that. The situation of Dr Bateman is unique ( is she a GP or internists?) and she would be considered a specialist. The common, garden GP variety does Pap smear, annual check ups and flu shots, not cytokines and Nk cell function.

 

[Bob]

I've just been looking at the CCC, and it seems that the core symptoms in the CCC are replicated almost precisely in the new SEID criteria: The only substantial difference in the core symptoms is that pain is a requirement for CCC whereas it isn't a requirement for the SEID. The CCC requires disturbed sleep whereas SEID requires unrefreshing sleep, but unrefreshing sleep is listed as an example of disturbed sleep in the CCC.

CCC core symptoms: Fatigue, PEM, sleep disturbance, pain.
SEID core symptoms: Fatigue, PEM, unrefreshing sleep.

I'm very pleased that pain isn't a core symptom for SEID because many ME patients are not affected by localised pain, and wouldn't complain of pain per se. Most of us experience extreme discomfort, but many would struggle to describe it specifically as pain. Localised pain is related more to fibro.

The CCC also requires cognitive symptoms to be chosen from a list of alternative symptoms and then it requires a range of other non-core symptoms to be chosen. These non-core symptoms introduce a degree of heterogeneity to the CCC.

So, in terms of core symptoms, the new SEID criteria look almost identical to the CCC, but without pain, and considering that, I don't quite understand why there's so much intense discontent being expressed. For clinical criteria, rather than research criteria, the simplicity of the new criteria will perhaps serve patients better than the CCC. Yes, the new name is dodgy, but no two people are ever going to agree about a name, and perhaps we will widely refer to it as ME/SEID. Fukuda is now obsolete, along with the CFS name. Apart from the new name, I'm struggling to understand what's not to like.

I'm slowly reading through the full IOM document, and I haven't seen anything I don't like yet. It includes an interesting history of ME and CFS, including a description of the historic ME outbreaks in the UK, and the outbreaks in the USA that led to the introduction of the CFS moniker. It dismisses the historic claims that the UK ME outbreaks were a case of hysteria. It acknowledges that patients protested about the IOM process and wanted the money to be used for biomedical research instead, and it acknowledges the letter sent from the expert clinicians that demanded the use of the CCC. Still a lot to read.

 

[Sidereal]

I am opposed to GPs being responsible for our diagnosis and treatment but since no medical specialty except psychiatry wants anything to do with us we're left with no choice currently.

 

[lansbergen]

.
The IOM report will open the door to endless 'sleep studies'.

As if we need more..
.

I am not cured yet but I sleep like a baby. Will that exclude me from the SEID diagnose?