Welsh Government Report

[Ian123]

The M.E./CFS and Fibromyalgia Task and Finish Group makes a number of recommendations, that each health board should:

identify an appropriate clinical lead or leads for ME/CFS and fibromyalgia by April 2015

identify a “home” for services for M.E./CFS and fibromyalgia

develop effective local pathways for children and adults with ME/CFS and fibromyalgia.

wales.gov.uk/topics/health/...

[jellynpain]

Wow, that's impressive but dependent on medical professionals sincerely believing not somatic (many consultants still wrongly take this view).

Is this just going out in Wales?

England has Specialist clinics but my nearest is 13 months waiting list, then little can do it seems.

I was bombed out of it as I have symptoms over & above normal range!! So left to get on with it to date. The over & above symptoms not been diagnosed or any treatment.

Hope this plan is implemented & carried out successfully for Welsh sufferers.

X

[Ian123 in reply to jellynpain]

The medical professionals will be driven by cost effectiveness - early diagnosis and intervention is cheaper than the measures required when the condition has advanced.

[Starbys]

Unfortunately moves like this won't benefit Myalgic Encephalomyelitis patients unless or until the condition is universally accepted as neurological and multi systemic - organic; Categorical nationwide acknowledgement that it is NOT pschosocial, social, psychosomatic - as has already been proven by decades of scientific research which is continually expanding, but currently by the UK authorities continually pervasively ignored.

Until then tragically the field will be dominated by psychologists and other professionals who offer inappropriate, unhelpful and damaging advice which contradicts the thousands of biomedical research findings in ME and evidence that these approaches are harmful rather than helpful, and causes most patients to get worse rather than better.

I think there's no point in pushing for new clinics and clinical leads whilst this approach is still in the frontline.

We should focus all efforts on getting this neurological and multi system disease universally recognised by the UK DOH and NICE, and focus on the implementation of medical care and long term follow-up of ME patients to be led by neurologists.

Whilst the other focus being on biomedical research including into treatments such as rituximab, other autoimmune drugs and anti-virals etc. will help to provide evidence for proper medical treatment aimed at the disease process to be provided to ME patients.

That's what will give real hope!

[Ian123 in reply to Starbys]

I felt this part was very important when the service was looking for a home that the clinical leads would work from.

"There is scope for some flexibility in deciding which speciality (or specialities)

should take the lead, but the home should not be located in mental health

services"

Ending the Wessely school that brought us CFS when ME has been coded into the neurological chapter of the World Health Organization ICD since the 1969 publication.

Updating the 2007 NICE guidelines on ME/CFS with the same clarity that the Scottish and Welsh governments are providing is long overdue, as are NICE guidelines for Fibromyalgia.

[Starbys in reply to Ian123]

I definitely agree with that quote, but there's long way to go.. Physicians whatever speciality they're from who are only offering GET and CBT - under NICE which applies uk-wide - will not be of help to ME patients - will make them worse by provision of harmful therapies (GET/GAT in particular) - unless proper testing for differential diagnosis appropriate medical treatment aimed at the disease process and symptom control are the central focus. And unless the physicians running the service fully accept the science that proves it's a multi system disease.

Currently in the UK clinics even the ones run by consultant clinical immunologists are mostly terrible, because the consultants believe that it's a psychosocial illness.

So locating the illness outside of mental health services is crucial, but at the same time the problem lies much deeper.

Also FMS patients may well be better off without NICE guidelines for the time being otherwise they could end up in a similar scenario as ME patients have with NICE.

[TheAuthor]

Thanks Ian123, that was a very interesting read. I would like to see similar happening around the UK as a whole but just as a starting point?

Take care my friend

Ken

[Ian123 in reply to TheAuthor]

Agreed that Wales would have the best starting point should the area boards implement this.