Wales (UK) - Govt petition P-05-926 To Provide a Chronic Fatigue Department in Wales

07/01/2020 - Agenda item, Petitions Committee P-05-926 To Provide a Chronic Fatigue Department in Wales

http://www.senedd.assembly.wales/mgIssueHistoryHome.aspx?IId=26835&Opt=0

Research brief
http://www.senedd.assembly.wales/documents/s96850/Research Brief.pdf

My comments on the above:
Don't know anything about who proposed this but imo it's a pretty poor representation of the problem and the illness. 'Chronic fatigue'(?)

sigh, was hoping for something more positive.

 

Could the clinics be encouraging people to sing petitions to keep them open or expand the service?

 

It seems hard to persuade people not to lobby for services: many don’t seem to have realistic expectations of what they’re likely to get. In my country, people have been lobbying as they want Ampligen and some other expensive drugs available in a few expensive US private clinics to be offered, where the chances of getting that are very low but a CBT and/or rehab service could easily result. Similarly, little chance Myers Cocktails are going to be offered on NHS for ME/CFS.

 

Ignoring the problems with the case linked to this petition, it is an interesting dilemma as to whether we should be seeking more or fewer specialist ME services before the NICE review is complete.

In principle everyone should have access to appropriate specialist provision, but it is arguable that the current specialist services in the UK do more harm than good. It is arguable that overnight the closure of the current specialist services would result in a net benefit for people with ME.

We desperately need clear indications of what a beneficial ME service, on the basis of our current knowledge, should involve and to get rid of the harmful GET and inappropriate psychological interventions most of the current specialist provision focuses on.

 

Is this a new therapeutic approach I missed? ‘Singing petitions’ sounds fun, though I never had much of a singing voice and it has not improved with the worsening of my ME.

Don’t you just love autocorrect?

 

do we have a representative from WAMES here?

 

I wish the people here in the Isle of Man had asked for help from somewhere like the MEA before bulldozing ahead. Their wish has been answered and now we have a neorophyscologist due to start in April. After a Google search neurophyscologists work with occupational therapists etc so in a round about way we are getting GET and CBT

 

WAMES are on twitter
https://twitter.com/WAMESMECFS

would someone maybe like to alert them to this thread.

eta: their contact email
Email: helpline@wames.org.uk

 

The ME community in the UK should be campaigning for 'services' to be abolished, not new ones added. Given that there are zero evidence-based treatments for ME/CFS, the only 'treatment' you're going to get is CBT/GET and you expose yourself to the risk of coming on the radar of psych services, and in cases of children, social workers and other arms of the state that could get you removed from your home and placed into some BPS gulag.