Action for ME GP webinars

Docsimsim said:
Maybe it’s because they are a generic/vague fatigue organisation rather than a specificallyM.E. one? Chronic fatigue is a dust bin diagnosis convering many illnesses that have fatigue as a feature, and it can include psychogenic fatigue which responds positively to CBT/GET. Until ME and CF/CFS are adequately separated and heterogenous dust bin disgnosis fatigue patients excluded from ‘ME trials’ we are doomed to get spurious results
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I think there's a lot of truth in that. After all, they supported the PACE trial that used the Oxford definition of 6 months fatigue.

Perhaps we should ask Action for M.E. to change its name to action for chronic fatigue. I have no idea why the acronym AfCF suddenly made me think 'covfefe'
 
Trish said:
I think there's a lot of truth in that. After all, they supported the PACE trial that used the Oxford definition of 6 months fatigue.

Perhaps we should ask Action for M.E. to change its name to action for chronic fatigue. I have no idea why the acronym AfCF suddenly made me think 'covfefe'
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Action for Covfefe or Covfefe Action seems like a good name for them...
How about the Association of semi Alternative Facts
 
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Amw66 said:
Action for ME have instigated and delivered a series of webinars for GPs and Health professionals; most are accessed via the Webinars for GP website - medics amongst you may be able to access these. webinars potentially offer a great form of information dissemination, and educating professionals can only be a good thing - if the facts are correct.
https://webinarsforgps.com/

Keith Anderson, the specialist nurse from Fife has delivered one, which would be interesting to see - Keith is dedicated and has worked with PwME for many years.

There is one resource which is available as a video or slides without GP registration-there are to my mind, some issues with this which @Action for M.E. may wish to take the opportunity to revise/ substantiate-

Meeting the needs of people with M.E./CFS: essential facts and practical tips was presented by pharmacist and Action for M.E. volunteer Emily Beardall, who also has M.E., in November 2017
https://vimeo.com/simonwade/review/245274449/bdaadd0d71

the slides are accessible here-
https://www.dropbox.com/s/6vkm0zglg6xp6bw/1749 Meeting the needs of people with MECFS.pdf?dl=0

I have not as yet watched the video- the slides however have some initial aspects on a quick run through - slides copied below

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Sleep management as " sleep hygiene" has had significant negative impacts - for many, this leads to less overall sleep and can be a major contributor to crashes


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It does not appear to have sunk in that GET has NO place in treatment of ME. The non PACE version of CBT has been helpful to some, but this is not the " recommended" form of this therapy, (which had no effect) and CBT itself is being questioned as its evidence base is far from robust

I will watch the video later to see how PACE is portrayed


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Can we have references for these statements please? In particular the rates of recovery and what " recovery" actually means.
If there are no robust references then i would suggest hat the slides be altered and any GPs who have accessed the resource be notified of the amendments

I would challenge the statement re children and young people in particular - the international paediatric primer provides a better indication of " recovery" and what this actually means- see snip below
I know of very few people whose child has ME and who recovered within 2 years - with simple chronic fatigue and post viral illness would be more feasible, but these are not ME, and this conflation serves noone well. This is a resource for professionals - creating an expectation for recovery within a defined timescale has more ominous repurcussions for children and adolescents- safeguarding, forced GET and PRS/ alternative diagnosis (with the same symptoms) can, and do, follow on when "recovery" is not achieved - this is the country where children until very recently "did not get" severe ME and comorbidities such as POTS. please provide a reference for this 2 year recovery statement or amend the slide

Paediatric Primer-

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The primer is comprehensive and an excellent resource and should be signposted on the slides as a key resource.
https://www.frontiersin.org/articles/10.3389/fped.2017.00121/full#h5

Please note that the specialist services in Glasgow is the integrative care centre ( former homeopathic hospital) which offers mainly meditation and counselling. The Fife servoce is 1 specialist nurse and the Lothian service is a centre which @Emsho may be able to detail better than I
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@Action for M.E. can we have some feedback on this please - this is causing concern and risks harm.
 
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