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Anyone know anything about King's College or Great Ormond St CFS Units?

ukxmrv

Senior Member
Messages
4,413
Location
London
Am actually very sceptical about these too, as most of their protocols don't seem to be based on sound scientific evidence, as far as I can gather...........

You will be waiting a long time then. Also you are weighing towards what sounds like the concept of "evidence based" versus "clinical experience "which was one of the thing that NICE began to acknowledge was missing in their deliberations.

If you consider your alternatives in a purely rational way (i.e. without giving extra weight to scientific evidence) then you'll see that an a patient with a disease that doesn't come with an easy textbook explaining the reasons for your symptoms and how to treat them, your choices are stark.

When you say that you are "skeptical" about Dr KDM I am wondering if you really mean that you don't know the sound scientific basis for his treatment of patients and even if there is any? I am also hearing that you disregard his clinical expertise in treating patients because he hasn't been able to fund studies as he would wish.

It's a chicken and egg situation, what comes first the "sound scientific evidence" or the "clincial treating experience" and in the absence of one (caused by the lack of funding into the disease and not that the scientific evidence couldn't exist) which do you chose?
 
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13,774
I don't know much about KDM's stuff, but some things I've heard have sounded unsupported by the evidence. Myhill also seems to go beyond the evidence too. These people might do less harm than Wessely, but I still wouldn't respect their judgements or claims about CFS.
 
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15,786
Of course, I'm sure a fair amount of it is pretty good stuff but as Esther12 said, a fair amount of it also goes beyond evidence.
If I went with the UK definition of evidence based, I'd be in constant pain, unable to think, and pretty much bedbound.

I'm not going to wait decades for the evidence to catch up with reality.