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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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I don't understand how you can think things have changed so much because there are some examples of good doctors out there.
Journal of the Royal Society of Medicine
Volume 84 February 1991 118-121
A report - chronic fatigue syndrome: guidelines for research
As you can see, the only required symptoms are physical and mental fatigue. They add that other symptoms may be present, but they don't require them.a) A syndrome characterized by fatigue as the principal symptom.
b) A syndrome of definite onset that is not life long.
c) The fatigue is severe, disabling, and affects physical and mental functioning.
d) The symptom of fatigue should have been present for a minimum of 6 months during which it was present for more than 50% of the time.
e) Other symptoms may be present, particularly myalgia, mood and sleep disturbance.
Mental fatigue is a subjective sensation characterized
by lack of motivation and of alertness.
My reason how they describe physical fatigue is to show that they don't use the word "fatigue" to describe a broad range of symptoms.Physical fatigue is felt as lack of energy or strength and is often felt in the muscles.
Post-infectious fatigue syndrome (PIFS)
This is a subtype of CFS which either follows an infection or is associated with a current infection (although whether such associated infection is of aetiological significance is a topic for research). To meet research criteria for PIFS patients must
(i) fulfil criteria for CFS as defined above, and
(ii) should also fulfil the following additional criteria:
a) There is definite evidence of infection at onset or presentation (a patient's self-report is unlikely to be sufficiently reliable).
b) The syndrome is present for a minimum of 6 months after onset of infection.
c) The infection has been corroborated by laboratory evidence.
But the reason some of us are concerned about the focus on CBT and exercise in the physician education pamphlet is...because CFS is an intensely political disease like AIDS, cervical cancer, and others. We can never--our political organization the CAA can never--forget that, even when talking to physicians. We can never lose sight of the fact that there are individuals and institutions that would love to capture the disease definition and turn it to their own purposes and beliefs.
So when the CAA signs off on a document with a focus (among other focii) on exercise, yes, it is a instance of politics. It is a moment with the potential to tip things towards the Wessleys and Simons of the world or the legitimate CFS researchers of the world. It is imperative that our political organization never legitimize a document that can be interpreted as abetting those who argue--despite a preponderance of evidence--that CFS patients are "fetishizing" the illness experience and, in fact, are simply de-conditioned and need to exercise.
Does this sound like cognitive problems to you? Is it your experience that hallmark signs of CFS are lack of motivation and alertness? This part appears to set the stage for a mood disorder.
Here they offer a subset that is based on an infectious trigger. The trigger must be demonstrated with laboratory tests.
The situation for ME and CFS is dire today and much worse than it has ever been. XMRV offers some hope but there are NO good doctors who can treat ME or CFS in the UK. The few who exist have their hands tied.
Problem is, so do a lot of people who don't have CFS. They leave out so many CFS symptoms the studies become diluted with people who don't have CFS.YAY! I qualify for something.
Hi Countrygirl, sorry I missed your post yesterday, I was just looking for a link I saw somewhere here and spotted it.
I saw the CMO update to GPs, it is really unfortunate for those who have managed to get their GPs on side (not many have), they will probably have their treatment withdrawn now. It makes no difference to me, as my GP provides no treatment for M.E. or Chronic Lyme disease, I have the choice between CBT/GET or nothing and I have chosen nothing. I buy my own antibiotics and a few supplements when I can afford them.
Well, I am a very calm bunny today and can appreciate better the many intelligent posts here, so I think I may take the time to read some of them again.
I am in that position now with heart issues (confirmed by a major hospital following an emergency admission), but my GP has failed/refused to implement the cardiac function tests as instructed by the hospital.
The medical profession here seem to suffer from a totally irrational belief system: a diagnosis of M.E. forever excludes any physical cause for any symptom - ever. In other words: people with M.E. are immortal.
Fresh eyes said: I think hvs' point is so well taken here that it bears repeating. We are not simply asking that the CAA give *us* better advice, in the service of our personal health (though that would be nice). We are asking that the CAA be our representative against the Wesselys of the world, who are (horrifyingly) in a position to implement systems that will harm us. I wish we could feel more confident that that was happening.
I wonder what you mean by "treat"? I've not had a doctor who treats ME/CFS. Mine have treated the symptoms individually and conservatively.
Success of this stage is dependent on patients learning to monitor heart rate so they avoid pushing too hard and triggering relapse. A functional goal would be for the patient to engage in activities of daily living without precipitating postexertional malaise.
Poet: Is there any part of my post in which I recommend that we abandon it?
I don't think that analogy works. There are many other safe alternatives to Vioxx. For CFS patients, the only alternative is to languish, and therefore it is more of a matter of risk/benefit like a highly toxic chemotherapy. (Some patients do refuse chemotherapy in favor of death.) I'd look for a way to minimize the risk rather than banning it.If you have got away with it fine, as I said many people took vioxx with no side effects, yet they banned it for everyone as they couldn't tell who would suffer.