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 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 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 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- 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
I am horrified that AfME are still spreading the myth that GET can help some patients. And to doctors of all people. @Action for M.E. this is completely unacceptable and irresponsible, given the harms suffered by so many. I too would like to see solid evidence for the recovery claims, and the claim that most pwme improve over time.
Thankfully I don't live in the UK and don't have to see a professional who has been "educated" by AfME. If I did, this would affect me, as I am a mild sufferer. Here is a question I asked of AfME on 3rd April: Unfortunately it remains one of the many questions put to AfME on this forum which they have chosen not to respond to.
Emily Beardall blocked me on twitter when I suggested that her belief that PACE was a great trial was in fact not the case. I have no idea why she seems so smitten by PACE but she clearly is.
Did she say PACE was a great trial? It has been ages since I saw her comment on it, but I thought she just kept doing that annoying thing of deferring to authority figures, and saying that what matters is what is in peer-reviewed journals. Maybe now criticism of PACE is in peer-reviewed journals she'll feel able to take it seriously.
It seems that the slides are sponsored by the Scottish Government. I didn't know there was a Scottish Government but presumably it is the body responsible for devolved matters like health service. The basic problem here is that the person producing the slides does not understand the topic they are addressing at a level that would be helpful for GPs and patients. Medical education is not about regurgitating recipes but about helping doctors to understand what they are doing and why. That requires accurate facts rather than vague and misleading sound bites. I suspect (and hope) GPs will in fact show little or no interest in a video based on this material. It begs the question as to who on the medical side is advising AfME.
Their medical advisors are retired GP Dr Gregor Purdie and Prof Julia Newton. Prof Newton does a great deal of biomed research into ME in the UK and I understand that Dr Purdie was a Scottish GP who took ME v seriously. I wonder if they have any advisory role in these videos? I am more concerned by the older Hazel O'Dowd one. Can any doctors access these or is it only GPs? @Action for M.E.? https://www.actionforme.org.uk/about-us/our-medical-advisers/
The video appears top be UK wide -WAMES flagging it up last year. Emily Beardall is a pharmacist and has ME, so this resource may have piggy-backed onto Scottish funding. I suspect it may have been developed under previous medical advisors - if it had oversight at all. In large organisations timeframes tend to be longer. http://wames.org.uk/cms-english/201...2017-meeting-the-needs-of-people-with-me-cfs/ I had suggested my GP look into the CPD series, I am now a bit concerned. The 2 year recovery slot has been discussed on parent's forums and generally found to be lacking any reference to reality, however this may simply reflect diagnosis issues. My GP for instance is now of the opinion that my son also had CFS after glandular fever - he never had PEM and recovered after 15 months to be able to work part time ( having lost out on last years of school) and after 2 years was fully recovered. I think this illustrates how key PEM ( or whatever it is defined as) is as a diagnostic criteria. If we have medics here who can access the other videos it may be a worthwhile exercise - I am not filled with confidence as to what the content may be
I think from stuff I've read in the past I remember AfME were working with the North Bristol ME/CFS service for their educational stuff and this was run by Hazel O'Dowd, a psychologist very much of the CBT/GET approach. I may be out of date on this.
well it started here when AfME were 'welcomed' as members of S4ME; since then all I've seen is AfME soliciting information to try and make themselves more acceptable to the 'militant minority' without really giving anything in return.
Your "I told you so" T-shirt is being printed as we speak. Well to be fair they have said we can complete their survey.
The prognosis section suggests most people are just rising up to the surface - to remain mild - but not fully making recovery. Is this borne out by any evidence? Mild is perhaps a term that needs ditching when grade one level ME often means no exerting physical activity, no late nights, vastly reduced social life but able to remain in some form of work. For a teenager especially, that reduction in normal life function is hardly mild. Obviously mild is a broad category and some semi recovered might also use that term
Having to call what I have "mild" is rather annoying, but it does need distinguishing from the much worse condition many are in. I suppose we could do what fast-food restaurants do when they want to avoid describing anything they sell as "small" and describe what I have as "regular" ME - but then what do we call the other two?
I see they also cite NICE's CG53 without any hint it is in the process of being completely overhauled.
