A unifying theory for cognitive abnormalities in functional neurological disorders, Fibromyalgia and CFS (2018), Mark J Edwards et al.

I don't feel these people understand ME and have concerns the MRC is funding this avenue pretty much only after funding the bps lot pretty much only.

I think it's worth exploring the similarities between ME brain dysfunction and tbi concussion syndromes and it is interesting to me that concussion and post tbi share the phenomenon of light sensitivity and sensory overload which are not seen afaik in MS. All brain and sensory symptoms are much more pronounced in the severe, trying to get readings from people still able to work or study etc might not be sensible. It's good they're looking at this and it's of interest that those conditions which they can't dispute and ours , which they probably still do, share the vexatious features of not showing up clearly on their tests

I was concerned at their even wasting paper on issues such as perfectionism , I struggled even to read the paper due to severe ME brain issues and have no time for any psychologisation of this distressing symptom if that's what was happening

Overall I am unsure whether their approaches to research May be helpful in some ways but I do know that the whole picture of ME symptoms has to be understood by any researcher trying to piece together a piece of it, from what I've read of FND theres am absence of talk regarding immune function or muscle function which if reflective of their attitude is obviously concerning. In ME research I've read theories of dorsal root ganglionitis and muscle ultimately affecting the brain so looking at the brain as cause and in isolation, if they're doing that seems wrong, On the other hand some see the brain as key. But people can obviously research from any angle of interest to them, from fatigue across conditions, to cognitive function across conditions.

 

YES!

 

Is that what they were suggesting, I found the jargon hard to read through. Just meet 1 child who can only do one hour home schooling a day or something to see that this shouldn't be psychologised away. Do they accept the fatigue limitations but not more than that for cognitive function. I'd have thought there's clear issues with short term memory and information processing and cognitive ability maths etc once people themselves are at a level reporting high cognitive dysfunction.

 

My "YES" was in relation to Snowdrop's comment on the psychiatrists themselves. Ie that they really should stop accusing us of stuff, when they seem rather over-attentive themselves.

 

Re inconsistency. Sounds like their interview techniques follow interview methods police use. Repeat interviews, looking for holes or inconsistencies in the story.

The effects and restrictions of ME vary, even over the space of a few minutes. So, this fact then relegates those who suffer from this truly biomedical disease to the loony bin.

No other disease has variability?

 

Variability over hours, days, weeks and so on was one of the cardinal symptoms of ME alongside exercise intolerance. It helped distinguish ME from other diseases.