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I read the first few sentences. IMO this would get some backs up right away. The Canadian Consensus Criteria which is 115 pages long: https://www.mefmaction.com/images/stories/Medical/ME-CFS-Consensus-Document.pdf has an overview, which is 20 pages long...

It's very disappointing, but not surprising that the NICE guidelines are being ignored. If there was a biomarker, or a biomedical medication, hopefully things would be different. ME is horrific, but there is nothing doctors or pwME can grab onto as far as treatment goes. It's like boxing...

@Kitty That is awful. But I suspect it is standard practise. For a pwME, the phrase " under a doctor's care" can mean nothing. There's nothing they can do, but somehow, this is still seen as, or labeled "care".

Agreed, it should be self evident. This definition is a mish- mash. It looks like a few people added bits and pieces as they went along. This definitely needs an update.

Undoubtedly, there are recognized steps required or at least suggested, that are involved in a "proper medical examination", as the authors put it. These are presumably taught in medical school. Or, is this a naive assumption? The term "proper medical examination", appears to be elastic...

Yes, it would be easy to just continue with the message that BPS practitioners know best. Especially where contested diseases are concerned. I hope attitudes towards ME have improved. I know some governments have posted guidelines and other biomedical about ME. But, I don't know if this has...

Further to being blamed if pacing doesn't improve one's health, it may keep one from "falling off a cliff", into more severe ME, but IMHO, it does not improve health status. That is, for example, move a moderately affected pwME to mildly affected.

Thank you. As you describe, there could be several versions of pacing, with psychotherapists vying to be top dog with their version. IME, pacing cannot be other than individually regulated. To have some "authority"who knows boom all about ME superimpose a pacing template over one's life is not...

Contrary to the BPS naysayers, there are objective measures that indicate physical dysfunction caused by ME. For example, research findings of autonomic dysfunction involved in ME are gaining in number. Link to follow later.

Absolutely!

In addition to cutting off support, requiring disabled people to repeatedly reapply for financial support can be very stressful, and lead to despair and suicide.

Yes, I think it's a reasonable guess. The Canadian ME/CFS Overview, page 18, notes edema or demyelination as findings on brain MRIs of pwME. I will put the link up in a bit. ETA: The link to the CCC ME/CFS Overview; on page 18, about 2/3 of the way down; see "MRI brain scans"...

I know alcohol intolerance has been acknowledged by some ME specialists. If I recall correctly, there was reference made to this in a Canadian government workshop booklet on CFS. Can't recall the title. Personally, early on, I had a bad reaction to a very small bit of alcohol. Needless to say...

Thank you for this @dave30th And thank you to Dr. Kane. We very often see that it takes living with controversial diseases, or caring for someone with them, to more fully understand them. Five or ten minutes in the doctor's office is less likely to provide real insight.

Third party corroboration seems to be the only way to get the stamp of approval in many, many areas of life. It would be quite the departure from the norm if millions of people with the same condition were actually taken at their word.

I know of a couple instances where MS has been mistaken for ME, and vice versa.

Yes, better to have sympathy directed one's way, than the reverse response.

:thumbup:

From the study: "....similar neuroimaging findings in the brains of people with both MS and ME/CFS." ( my bolding) Does the above sentence mean the researchers looked at people who had both diseases at the same time? At first it looked like this was a comparison between people, one group with...

Such appalling, and very sad situations! And, the gaslighting fans out to relatives and friends of the individuals in question. Either for seeking medical help for their loved one, or in trying to get help for their own medical issues.