Co-creating recovery in CFS/ME: A reflexive exploration of a Rebuilding your Life programme

sorry, stupid moment! So they haven't written it up as an actual paper, it is just a summary in with some others. Interestingly at the end it says "Treatment is uniquely based on a patient inspired intervention."
If you had these amazing results from "the largest study ever conducted" in this group, you would expand a bit on the method of intervention which presumably is key. Or am I having more stupid thoughts?

 

I don't this means inspired by the actual patients involved in the study. At least one of those conducting the trial is recovered but was formerly severe. This same person winced visibly, when I talked about the psychosomatic model of ME being overturned.

 

FINE did widen their entry critieria though, so maybe they're not counting that as a study on severe CFS/ME?

 

Clare McDermott is the corresponding author of this new paper with CureME at the London School of Hygiene & Tropical Medicine.

https://onlinelibrary.wiley.com/doi/full/10.1111/hex.12857

Can't say I'm enthused by McDermott's involvement after the work discussed in this thread. Qualitative research generally seems to allow researchers a great deal of leeway in how they interpret/present patient concerns, and having someone like McDermott doing this doesn't sound like a good thing to me.

 

This was interesting (from the paper, bolding mine):

Comparing PwME's experience to that of people (later) diagnosed with MS really emphasises the point that our responses are not pathological, they're normal.

 

Clare McDermott has herself recovered from CFS/ME.She developed it after encephalitis aged 12 and was seriously ill for over 15 years.

"I was very lucky in having help over a number of years to make a recovery journey, which despite many ups and downs, has finally led to me being well again."

 

Blimey, sounds like The Secret cult or Channelling Abraham.

 

She's also associated with the Poole based Emotional Processing group, a U of Bournemouth research unit and U of Southampton.

http://emotionalprocessing.org/chronic-fatigue-syndrome/

and I believe her mother (or a close relative) was/is an OT at the Dorset "Wareham CFS Clinic" which was used as a model for the English CFS Clinics.

 

Oh dear.

the references on that website are very old 2002 is the newest - the report to the govt Chief Medical Officer. 1994 CDC diagnostic criteria. All that energy, yet as a research coordinator can't be arsed to keep up to date.

Waffle, waffle, waffle....

Bit at the end I got cured, acknowledges she was lucky, talks about a Dr Fleming also cured who wrote:

Right. Lovely. Now cured, that implies an enlightened being with a deeper insight into the workings of the universe and beyond.

Nothing about the humbling aspect of the blind luck if spontaneous recovery (or remission) and, with diagnostic criteria that old, the possibility of plain old misdiagnosis.

Harumph.

I feel better now I've got that lot off my chest.