Wednesday, November 16, 2011

Oppose the proposal by the Coalition 4 ME/CFS

By Jill:

The NCHS DEADLINE for comments is this Friday, November 18!!!

This proposal by the Coalition 4 ME/CFS will NOT do what it says it will do or even intends to do.


To oppose this proposal, contact: NCHS <>, Donna Pickett <> ASAP!!!
Patients do not have to enumerate all of the scientific objections, just as
(please repost)

Sample letter to NCHS

Dear Sir/Madam,

I am an ME patient and have an ME diagnosis
or - as a patient/family member/stakeholder in this
matter, I strongly object to the combination of ME and
CFS under ICD code G93.3. NCHS has coded ME
and CFS accurately and separately in the original
intent for ICD-10-CM. Please keep the ME and CFS
codes/classification/diagnoses separate.

ME has been coded at G93.3 and should not
be changed or subdivided as in NCHS Option2.

The classification for ME should be and remain as G93.3 under
Diseases of the Nervous System. Based on science and policy,
it is not clinically valid to classify CFS at code G93.3 as the
Coalition 4 ME/CFS proposal has recommended. Such changes
should not be made to ICD-9 or 10CM or to the future ICD-11.

Send to: NCHS <>,
Donna Pickett <> ASAP! Deadline is Nov 18..


Anonymous said...

thank you for posting this
i have ME and oppose the scientifically invalid and deleterious linking of it to CFS. can you activate the link to the site so I can briefly add my voice

Anonymous said...

I don´t agree with that because all the biomedical literature calls thsi illness CFS. And in many countries like Germany CFS is the usual term for ME. Decisions in the US have always impact on other countries. And to give up the term CFS would be a victory for all those psychobabble around. while keeping CFS as an organic disease will really hurt all those damn psychiatrist that are talking nonsense all the day.

Anonymous said...

@Anon 2:29pm

The biomedical literature is only a fraction of all the research done on "CFS" which includes a lot of psych studies and negative findings as well. The most used definitions, the CDC and Oxford, are resolutely against such findings and make a point of saying if something's there, it's not "CFS".

The "usual term" is not the same thing as the right term; CFS is hardly any more appropriate than depression or functional somatic syndrome. Do you not want CFS to be replaced by ME? That can't happen if "CFS" is validated.

Biomedical findings don't usually impact outside the US, but all the bad stuff (including "CFS") does, otherwise the UK, Netherlands and other countries would have it much better.

I don't think letting go of CFS would be a victory for psychobabblers, because they already had that victory in 1988 and 1994. What we need to do is rescue people who have an organic disease from CFS; the remainder they're welcome to, like a bear is welcome to a bit of rotten meat as long as it lets the people get away from it.

You will NEVER be able to destroy a psychiatric category, 100 years of psychiatry have shown us that.

CFS is a category, it contains many illnesses; it's only the one (ME) we can afford to focus on rescuing. Mental illnesses such as F48.0 "fatigue syndrome" are the psych's business. We're drowned in "sub-groups".

The category of CFS offers us virtually nothing except harm and misunderstanding. It has wiped the slate clean of old ME "gray research" so we keep seeing the wheel being lost and reinvented.


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