National Instiute of Health and Clinical Excellence "CFS/ME" Guidelines discussed on BBC Breakfast News

On the morning of Saturday the 17th November 2007, BBC Breakfast News broadcast a 5 minute feature on the challenge being made to the NICE guidelines on "CFS/ME".

I have transcoded the BBC Breakfast interview with Dr Charles Shepherd and Dr Sarah (Establishment-Mouthpiece) Jarvis.

My recorder had a small hiccup but both doctors got cut off by the presenters when they started talking to each other and the item was terminated at around the same moment so nothing was lost from what they said.

In my view Dr Shepherd did pretty well and we should thank him for trying but I could imagine the presenters eyes were glazing over because it was probably pretty much above their heads for a Saturday morning daytime feature.

As someone has said, this sort of discussion needs to be on for ten minutes on Newsnight or for half an hour on Panorama.

To those of us who are interested it was worthwhile but to lay people who know nothing about ME - I don't think they will understand what the fuss is about.

I thought Dr Sarah (Establishment-Mouthpiece) Jarvis did a good job nodding in agreement at Dr Shepherd and then totally disagreeing by suggesting that ME and CFS were all one condition on an axis and that CBT/GET would be suitable for mild and moderate sufferers.

For the record Dr Shepherd correctly stated that in the beginning there was Myalgic Encephalomyelitis that has been recognised by the World Health Organisation as a neurological disorder i.e. a disease of the brain for the last 20 years.

It has only been since the mid 1980's that psychiatrist got interested in ME and redefined it as Chronic Fatigue Syndrome thus widening the definition so far that people with mental illnesses were subsiquently included.

What Dr Jarvis totally missed the point of was that for those who are severely affected - those with ME - the alternative to CBT and Graded Exercise both themselves laughingly called "treatments" is not a treatment at all..... she didn't mention that void of near nothingness that currently applies in terms of treatment options for people with severe Myalgic Encephalomyelitis.

Pacing is what is being offered is a management technique - it does nothing to address the underlying pathology of ME and so there are thousands of severely ill people out there - people she never sees who are getting nothing from the NICE guidelines of any worthwhile substance.

And then there is the issue of adaptive pacing therapy... pushing severely affected sufferers onto the CBT/GET bandwagon by the psychiatrists back door.

She also forgot to mention when comparing "CFS/ME" to Asthma that people do die of Asthma as people die of ME but then I doubt she'd ever come into contact with anyone severely ill in her relatively short but well paid career...

You can download the windows media video version here.... 6.7Mb in size

And also in divx (.mp4/,avi) format for those who have it installed for Mac, PC or Linux OS.... 13.8Mb

And in compact form.... 6.7Mb

In all cases just click on the links and select either save or open to view the video.

The bottom line is and always has been for the last 10 years..... when are the severely affected going to get anything of substance?

The severely affected are the most in need and are being the least served by this cold and short sighted one size fits all agenda.

NICE, the MRC and the Department of Health have so far failed those patients who need them most.

How many more people will die and how many more years will the severely ill have to wait before there is a fundamental change in policy for them?

After all this time of repeatedly asking "where is the biomedical research?" I think all concerned in forming health and research policy should be ashamed of the present situation.

So far you've delivered absolutely NOTHING.


Stephen Ralph DCR(D) Retired

Founder of MEActionUK