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Please spare us

So this trial was essentially as a platform to generate data to then implement GET for the severely affected. I mean in the severe we shouldn’t even be using the term GET because It isn’t , what they would say is rehabilitation or GAT. What I find bewildering is when I look at pictures of other...

I’d love to dry up her funding, there would be zero lost. She hasn’t developed anything new since her fatigue buzzy bee covered book.

Yes I didn’t see this issue taken up by charities although I saw some people say they’d written to complain. I’d be interested in the reply if anyone did here?

Because people with severe ME tend to drop off the radar and there haven’t been real attempts to identify numbers, presentation and outcomes this might have worth. I’m concerned that asking about treatment and outcomes might make pediatricians whod other wise just support or do nothing be more...

Whilst collecting data on severe ME in kids is good, this type of research could have been done years ago, obviously EC connection is a concern and what type of “treatment “ does she think exists? I see no support group involvement

It’s fine if he recovered, fine if he had anxiety inhibiting him with or without actual CFS, it was the bbc who should be Aware the biggest risks to anyone with ME is a) being assumed their issue is mental health b) people thinking they can “just” think and exercise the way out of it. So...

The bbc like doing this sort of coverage

On Facebook a hospital had a post promoting the continuation of exercise such as jogging, fine, in cold winter weather. However it then went on to say that having a cold was no reason not to carry on jogging in winter unless you had a fever which i thought was pretty controversial, not...

The problem with that to me from a severe perspective is that we don’t know and if people with severe ME ARE different or more complicated or advanced then the research on mild-moderate won’t be enough and afaic we can’t wait ten years to know that for definite and THEN start. I think that it’s...

Well I suppose the thing I should be worried about as a severe MUS patient is being taken inpatient and given compulsory art therapy

Seen in the context of somatoform disorder which the video moved from after starting as MUS, it’s easier to understand why the CFS patient voice is ignored because people who treat these conditions just routinely over ride the patient voice. Patients who refuse to engage with talking therapy or...

More on the bodily orientated psychotherapy mentioned http://www.goodtherapy.org/learn-about-therapy/types/body-psychotherapy Originating from fraud with repressed stuff manifesting as physical symptoms eg fatigue and pain

It was this link to a london MUS PAGE Peter gave above, there’s two videos on it. https://mus.elft.nhs.uk/

OMG OMG Thanks for sharing this further information @Peter Trewhitt id not taken this iapt stuff too seriously but watching just that video on the London MUS page linked, as a patient was horrifying. It starts out with a clear inclusion of FM, CFS and IBS as MUS. Then the head of MH. in a very...

Can something radical be done, like a Cambridge union debate set up where Rona moss Morris defends the MUS model versus the biomedical model advocate and then other people chip in. Where they can’t just exist in some powerful bubble, alternating between saying la la la and you harasser to...

This is the precise problem. She is as a former OT now psychologist trying to explain our illnesses through a CBT model based on the assumption that that’s appropriate because there’s not significant biological causes ... when there actually are we just haven’t found them because we haven’t...

The MS society has 29 000 out of a supposed 100 000 sufferers. There might be many reasons , including the £5 fee, but it does give them more Claim to represention.

I think that numbers is an issue here, 700 members is very low to hold sway compared with the 600,000 that supposedly might fit NICE criteria or Crawleys CFS. Even the MEA 5,000 members views is very low in that context (a problem with broad umbrella approach and nhs not giving patients group...

I’m not sure, Dr Charles Shepherd said conference Was off for “logistical reasons” then said he wouldn’t go into that any further which seems excessively cagey if it was just building booking etc and the minutes mentioned that they’d be more research to discuss later. MRC essentially show case...