1) yes & it's been possible to include pictures etc of the more severe for years the MEA have chosen to use people at a sporting event as their social media pictures which is completely the opposite end of the spectrum.
2) onwards seem to be about NICE and care
NICE, by not fully validating the illness in the way the IOM report does, as a serious systemic disease & over promoting CBT etc leaves the severe vulnerable to the medical profession continuing to see this as a "condition" of unknown cause determined by our own behaviour. I didn't actually think their included guidance for the severe was too bad but the gerneral message the medical profession gets about ME is not that IOM message, it's the naf CFS " typified by enduring fatigue" message which pretty much obliterates the existence and reality of the severe forms, deliberately in my view.
As we want NICE are written I dont think calling for some of it to be better implemented is necessarily helpful
There isn't an ME specialist with medical training in my area and I don't think many areas, so therefore that issue has to be addressed alongside calling for expert care to be available to the severely ill. Medical training at university level has to include severe ME and ME has to stop being lumped in with less consequential unexplained fatigue and IBS as an MUS.
I think specialist nurses need to be trained and available for in severe ME management and inpatient places without the pressure to rehabilitate but support for those who want that too should be set up. I don't think Severe ME research is easy without inpatient centres
Around care the biggest issues for the severe Are failure of Drs/ social services etc to accept the severity, nature, chronicity etc of this form of the illness and constant expectations on people to rehabilitate or improve.
Yes campaigning is good and the severely affected are in need of campaigning until we feel that the various issues around our recognition, care and research are in place.
Re 1: It would be more accurate to say that the MEA uses a variety of pictures on its social media, literature and magazine to illustrate the whole spectrum of severity that this illness causes
The pic I think you are referring to is of some healthy volunteers wearing MEA t-shirts who are raising money for research
Re 2: This is the section on severe ME/CFS in the MEA submission to the NICE guideline stakeholder consultation process:
Around 25% of people with ME/CFS are severely affected – being wheelchair, house, or bed-bound. This group faces a number of serious problems that are not being addressed in the current guideline.
FIRST is the lack of any meaningful guidance on clinical assessment of people with severe ME/CFS.
SECOND is the failure to refer to serious neurological symptoms such as diplopia, blackouts, atypical convulsions, loss of speech, and loss of swallowing necessitating nasogastric feeding – all of which are referred to in section 4.2.1.1 of the 2002 Chief Medical Officer's Working Group report on ME/CFS. The only reference to management of severe ME/CFS in the CG53 Quick Reference guidance is on page 17 where it recommends the use of telephone or email based management based on the principles of CBT and GET. This recommendation has not been welcomed or used by people with severe ME/CFS.
THIRD is the almost complete lack of any form of domiciliary care or assessment being provided by hospital-based referral services for people with severe ME/CFS. When added to the fact that it has become increasingly difficult for people with severe ME/CFS to obtain a home visit from a GP, many are left with no form of on-going medical care at all.
McDermott et al surveyed all of the 49 English NHS specialist CFS/ME adult services in England, in 2013. This involved a cross-sectional survey conducted by email questionnaire
All 49 services replied (100%). 33% (16/49) of specialist CFS/ME services provided no service for housebound patients. 55% (27/49) services did treat patients with severe CFS/ME and their interventions followed the NICE guidelines. The remaining services (12%, 6/49) offered occasional or minimal support where funding allowed. There was only one NHS unit providing specialist inpatient CFS/ME provision in England.
Reference:
McDermott C, Al Haddabi A, Akagi H, et al (2014) What is the current NHS service provision for patients severely affected by chronic fatigue syndrome/myalgic encephalomyelitis? A national scoping exercise BMJ Open 2014;4:e005083. doi: 10.1136/bmjopen-2014-005083
FOURTH is the way in which lack of proper medical care results in people with severe ME/CFS having great difficulty in accessing social care. This situation resulted in an Inquiry by the All Party Parliamentary Group on ME.
Reference:
Social care and ME/CFS – interim report prepared for the APPG on ME:
https://www.actionforme.org.uk/.../close-to-collapse...
I have also had a letter today from Dame Sally Davies, the Chief Medical Officer for England, regarding our submission to the stakeholder consultation process
It looks as though we are not going to get a firm decision from NICE on updating the ME/CFS guideline before October
CS