(Not a recommendation) CFS or where is my stocking?

[Pechius]

Just for information Ramsay and the others examined patients just after they became ill. By the time you wait 6 months the symptoms will not be the same. Their description of ME was that many patients experienced good (ish) health between relapses and that symptoms varied by the hour the day the week and more.

Some of us were diagnosed with ME, inflammation, severe myalgia, variability and all in the time before CFS was invented. Why shouldn't we want our illness to still be called ME when we have never experienced fatigue that prevented 50% of activities?

Do you mean that people with Ramsay ME don't experience fatigue, only post exertional?

 

[Bill]

Just for information Ramsay and the others examined patients just after they became ill. By the time you wait 6 months the symptoms will not be the same. Their description of ME was that many patients experienced good (ish) health between relapses and that symptoms varied by the hour the day the week and more.

Some of us were diagnosed with ME, inflammation, severe myalgia, variability and all in the time before CFS was invented. Why shouldn't we want our illness to still be called ME when we have never experienced fatigue that prevented 50% of activities?

Likewise, why would those of us who became ill over thirty years ago and have experienced disabling chronic fatigue with PEM that DID prevent 50% of activities, but have never experienced myalgia or (to our knowledge) inflammation of the brain-stem, accept a name that writes us out of the hope for a cure?

For those like myself, the term myalgic encephalomyelitis is seen as a threat to our aspirations to unlock the nature of our illness.

Bill

 

[chrisb]

@Bill

I wonder whether you have looked at Ramsay's definition of ME recently. It is possible that you are under a misapprehension.

He said that in less severe cases "muscle tenderness may not be so easily elicited but careful palpation of ....the muscle groups most commonly involved with the tip of the forefinger should enable the examiner to detect minute foci or exquisite tenderness.

 

[Bill]

@Bill

I wonder whether you have looked at Ramsay's definition of ME recently. It is possible that you are under a misapprehension.

He said that in less severe cases "muscle tenderness may not be so easily elicited but careful palpation of ....the muscle groups most commonly involved with the tip of the forefinger should enable the examiner to detect minute foci or exquisite tenderness.

I have. It doesn't fit me at all. I've never experienced over myalgia in 3 decades with CFS. But not a day when I haven't experienced some level of chronic fatigue, associated brain-fog, and the threat of PEM.


Bill

 

[Arvo]

re CFS & ME, I thought I'd post this from Swiss Re's write up of White's presentation of the PACE trial's results to them:

I have this as a document & screenshot of an undated , <2016 Swiss RE newsletter.
Can this be dated and linked to a PACE presentation by White, and is there a date and confirmation of such a presentation? (How do you know it is a "write up" of his presentation, apart from the obvious content and reference? Do they have close-by dates?)

 

[Esther12]

I have this as a document & screenshot of an undated , <2016 Swiss RE newsletter.
Can this be dated and linked to a PACE presentation by White, and is there a date and confirmation of such a presentation? (How do you know it is a "write up" of his presentation, apart from the obvious content and reference? Do they have close-by dates?)

Here's an archive of the web-page I think I'd linked to: https://web.archive.org/web/2013082...laims_for_chronic_fatigue_the_active_way.html

To me, the opening paragraph makes it pretty clear that this is a write up of the web-based discussion White was leading.

It says "There will be more web-based training offerings from the Swiss Re team in 2012" so it must have come before 2016.

 

[Arvo]

Ah yes, I missed that it was right in there. (I focused on the ICD claim and quick-skimmed through the rest.) Thanks @Esther12!