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Maybe stay until after their January AGM so you can find out what they are saying to jusify this stuff.

There is some weighting for severity of symptoms but the scoring for that is added to other stuff. Can't remember the details. Not sure I can face the webinar tomorrow. It will just make me helplessly angry. This is £150,000 from the MEA Ramsay research fund I thought was supposed to be for...

I have had a quick look back over the questionnaires and their scoring system. None of it makes any sense to me. It is only applicable in a therapist lead rehab environment using the BACME approach. The scoring is clearly intended to enable clinics to 'prove' they are adding value for patients...

I started looking at the information about the toolkit in preparation for the webinars tomorrow and Wednesday. The article on the MEA website reveals that Phase 2 of the project has been funded by the MEA with another £60,000. making a total of £150,000 the MEA has paid Sarah Tyson for this set...

It's the combination of rapid fatigability and rapid increase on exertion in other debilitating symptoms such as OI, muscle weakness and pain that combine to make ME/CFS so debilitating. If my symptoms and ability to funtion stayed the same all the time, whether moving or not, then I could put...

It's run by a bunch of pharmacists, some of whom describe themselves as 'independent prescriber'. The whole thing looks AI generated to me, especially the hideously lurid illustrations.

Fair point. I agree with you on the early stages it may influence course and even prevent PVFS becoming long term ME/CFS. Hard to quantify. Many of us with ME/CFS wish we had been made to rest and pace really carefully in the early stages for this reason.

Pacing to stay within exertion limits is a management strategy to try to prevent worsening by repeated crashes. I don't call it a 'treatment' because it is not correcting a biological cause of illness, but it is important harm prevention. If we stop pacing we get sicker. I think the difference...

From what you say, this sounds like the most useful recommendation.

Yes, and so is the section on exercise programs for those who want them. The NICE committee had too many of the old guard therapists and doctors determined to protect the old style clinics. I guess those who know better felt they had to put these sections in to get unanimous agreement to the...

This approach has scary echoes of the LP method of telling people they have to tell everyone they have recovered as part of their recovery, and to ignore symptoms. One thing that occurs to me with this is that, rather than empowering people, this is disempowering them by training them not to...

Thank you for raising this topic @nataliezzz. It's an important issue to be considered when people are being diagnosed as possible ME/CFS because of some overlap in symptoms. I vaguely recalled seeing UARS and sleep apnea being mentioned in some diagnostic criteria as things to exclude as part...

Thanks, @Chandelier, the article tells several people's stories of being abandoned by partners when they developed diseases such as Long Covid and cancer. I haven't read all the details. There is some discussion of research such as this one:

Dr Tim Robinson - Clinical Advisor Tim is Hope Programme Clinical Advisor and named Clinical Safety Officer at Hope For The Community. He enjoys ancient history, running, anything and everything to do with the sea.

I can't help feeling if doctors need training in how to communicate with patients about this specific situation, unlike other situations, then that communication must involve them learning how to tell lies convincingly. Learning how to say stuff they don't actually believe is true, but is...

I have read the article. Cort reports on some unpublished research from brain autopsies of 7 people with ME/CFS. He says they found: As usual with Cort's articles, he tries to link this finding with all sorts of other findings from other studies about HPA axis, cortisol levels and ideas from...

That Sussex group should be banned, and their collection of doctors should be struck off for giving advice that kills people. Do the MEA still support them? I have lost track.

According to Google: Dr Tim Robinson currently serves as the GP Clinical Lead for three NHS Long Covid Services in South West England. The clinics he leads are in the following regions: Bristol, North Somerset, and South Gloucestershire (BNSSG): This service is run in partnership with Sirona...

https://www.s4me.info/threads/news-from-precisionlife-ltd.37707/post-652566

I watched bits of his fatigue videos. Gosh he's irritating, waving his left hand around, patronising tone, tediously slow getting to the point. All the usual pacing up and no it's not GET guff. Mentions GET being not advised for ME/CFS any more in NICE guidelines, but describes GET wrongly as...