Cognitive behavioural therapy for ME/chronic fatigue syndrome is not effective. Re-analysis of a Cochrane review, 2019, Vink & Vink-Niese

SMILE needs to be demolished to achieve that.
If all you did was scan abstracts for evidence bases it would provide a " credible" alternative.
Mr Parker is about to cash in.
Who funded SMILE ?

 

I just quoted what they said.

I have been bedridden with severe ME for a long time. I do suffer from muscle fatigue i.e. abnormally delayed muscle recovery after trivial exertion (the M in ME). and I have got a similar problem with my brain (the E in ME). However I do not suffer from chronic fatigue i.e. feeling tired all the time

 

I don't understand how someone can be severely limited by illness without fatigue. Every nontrivial illness I've had came with fatigue.

Maybe the emphasis in "feeling tired all the time" is on "all the time"? Or is "tired" understood to mean a desire to sleep or rest, as in you do feel a need to rest or sleep all the time? That I can make sense of.

 

That, of all observations, truly highlights the nonsense of ME being also labelled CFS. Because when I think about it that also fits with what I observe in my wife; although she is mild/moderate your observation fits very well. I suppose it is "chronic" in the sense that the overall condition never goes away, but the symptoms fluctuate. The variability is not cyclic so far as I can see with my wife (i.e not time-driven) but definitely event-driven ... do something, then pay for it.

 

I think the suggestion was that this was centrally mediated, which it might be. There might be overactivity of neural inhibition mechanisms of the sort that occur with pain and which we can be completely unaware of.

 

Some thoughts on “fatigue” which in general language = “tired”

Chronic fatigue therefore = “tired all the time”.

As a child, if I ever said I was “tired” there were a few standard responses from my parents:

- Well get to bed at the proper time, and you’ll not be so tired!
- Once you get going you’ll feel better.
- You’ve had a few busy days, get your chores done then take an early night.

So all responses assumed the tiredness was temporary, and/or the result of a behaviour that could be adjusted to reduce the symptom. [Edit to add: It was also assumed one could push through tiredness.]

These responses were quite different to the ones I got when I was “feeling ill”. Then the responses were much more sympathetic, and in line with how ME patients would prefer to be treated. Of course I may also have looked ill, but then my chores were re-distributed to others, and I was given tea, sympathy and encouraged to rest. The complete opposite to the above.

So it seems to me that changing ME from an illness, to a form of “fatigue” was very much designed to tap into these exact public perceptions of tiredness, as a temporary and entirely fixable symptom of poor life management.

 

My limitations are not due to fatigue. For instance I do art work when I can but after about 5 to 10 minutes I have to stop because of double vision, pain in my back and tremor. On good days, resting for an hour means I can do another 5 minutes.

When I was still able to go out myself I tried to find some pattern but I felt exactly the same leaving the house whether I got a few yards before having to drag myself back when my legs gave way or if I could catch a bus and go shopping.

It is actually a problem because I often feel as if I am raring to go but collapse after a few minutes and it is so frustrating.

It doesn't feel like having a cold or anything (The flu like symptoms of payback are different of course)

Now I think about it, it's like nothing works or is painful rather than feeling ill as such. Like a sprained ankle say.

 

According to MEpedia funding was through the Linbury and Ashden trusts.

 

Dr. Ramsay published the first diagnostic criteria for ME, a condition characterized by a unique form of muscle fatigability whereby, even after a minor degree of physical effort, 3 or more days can elapse before full muscle power is restored; variability or fluctuation of symptoms even in the course of one day; and an alarming tendency to chronicity and the psychiatrists changed that to being tired all the time

 

Yes, but Ramsay's fatiguability might have a central mechanism. Ramsay may have thought that the 'fatiguability' implied that there was a problem in the muscle itself but I am not sure he did. If he thought the problem was an encephalopathy that would be central. The problem in polio is central, if not quite in the brain (in the cord).

Moreover, it is not clear that Ramsay's observations on an epidemic of acute illness were correctly extrapolated to the chronic condition now recognised as ME. He also mentioned cranial nerve lesions, which are not a feature of ME as we now understand it.

 

The present diagnostic uncertainty would actually make sense if PEM is a fairly specific problem that can arise from a variety of illnesses. That would create a situation where patients with different onset stories and symptom profiles have PEM in common.

 

Is there a way to challenge this as a charitable purpose: funding of ethically poor research? Would need to be detailed & relate to charities’ documents, but could be a cause for concern to raise with Charity Commission. Know the ethical approval issue is being raised by @dave30th elsewhere & could be the Trusts assumes would be appropriate, but legitimate questions of due diligence re grants.

 

Linbury Trust
http://apps.charitycommission.gov.u...steredCharityNumber=287077&SubsidiaryNumber=0

 

Ashden Trust
http://apps.charitycommission.gov.u...steredCharityNumber=802623&SubsidiaryNumber=0