Another CDC/CFS website change

[usedtobeperkytina]

Well, some of you may know I noticed some of the issues on the CDC website on the beginning, after someone else pointed to some changes. The main one I noticed, a shock to me, was the statement that ME has case definition different from CFS. I always thought that in the US, CFS was ME, or ME was CFS, however you say it. So I called as a patient and asked if ME is different and what is criteria for diagnosis. I thought maybe I have been misdiagnosed

Well, I saved that page. And I just checked. It is still that way. And the statement is on another page also.

The section that says CFS and depression might be in a spectrum of disorders is still there. But on another page, it says in a subheading that CFS is not a form of depression.

Not only do they have a definition of the illness that is different from many others, but I notice they have a new illness, at least it is new to me. This is not in a study, but is for diagnosis. It is called insufficient fatigued. I wonder, is that in ICD? I don't know a lot about ICD. This diagnosis is given to someone who has fatigue but does not have the other diagnostic criteria for CFS.

I don't see the section that instructs doctors to not run tests. I can't remember where it was. But wait a minute, it is on another thread in a link. I'll be right back.

Tina

 

[V99]

I email and asked where the ME page was. They said that in the UK CFS is a synonym for ME, and redirected me to the CFS page. I forwarded the email to a couple of good journalists.

 

[anciendaze]

To whom (will you make a nuisance of yourself) ?

I would presume the CDC.

One problem with this strategy is that they had thousands of calls and letters per month 20 years ago, and simply became more determined to have nothing to do with CFS/ME patients.

The other problem is that your troublemakers are part of a large organization, most of which has very different concerns. Very few people take the time to acquaint themselves with this illness. This leaves them vulnerable to misinformation from the same source we have been dealing with.

 

[Galena1]

I email and asked where the ME page was. They said that in the UK CFS is a synonym for ME, and redirected me to the CFS page. I forwarded the email to a couple of good journalists.

Within V99's quote lies one of the single most major problems for ME, CFS, ME/CFS sufferers worldwide.
The dismissive response from CDC that in the UK CFS is merely another name for ME implies that they are one and the same thing. I firmly believe, as does my GP and many others of course, that Chronic Fatigue is only one symptom of ME and many other illnesses.
It appears to me that the terms are interchangeable as best suits the establishment, self-serving individuals and organisations and funding provision. It is attitudes like those of the CDC and the UK NHS that are causing enormous damage and restricting serious bio-medical research. The NHS's current 'specialist ME clinics' present an ideal opportunity for serious investigation/research and it is being wasted, to some degree, by focusing on their preferred 'GET/CBT psychobabble-deconditioned' bulls**t. A bit like repairing a puncture and expecting a car to move even if the engine is broke.

 

[taniaaust1]

I email and asked where the ME page was. They said that in the UK CFS is a synonym for ME, and redirected me to the CFS page. I forwarded the email to a couple of good journalists.

Good on you V99. We need to get rid of that loop hole that they will use to weavel their way out of things.