I try not to let the shambolic mess that passes for “ME” advocacy these days get to me too much; through each, long heart-breaking moment of her agony and paralysis, my focus has to firmly be with Linda. Our days are brutal; here on the extreme edge, what you search for, passionately, is truth. Anything else just gets in the way, is potentially fatal. So, it is gutting knowing that 10 000 people have signed an MEA petition for “CFS/ME”, never did I think I would see the day the so-called ME community would cave in and use that most damaging, most insidiously evil, most wicked of labels. We haven’t had much to hold onto down the years , but at least we used to insist upon the correct use of Myalgic Encephalomyelitis, by God, with no mention of “CFS”. “ME/CFS” was bad enough, but it was physically repulsive to use the language of psychiatry that has caused so many deaths. For as people with ME should know by now, CFS/ME is not a single disease, it is a Chronic fatigue- focussed, psychi…

Stakeholders : speak up !!

Stonebird, July 2017
When you look at their track record, is it any surprise that NICE’s “Topic Experts” have decided “to not update the NICE guideline on chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy) at this time. ” , given that :
The NICE Guideline was based upon a handful of low quality Randomised Controlled Trials, that were methodologically flawed.
The NICE Guideline failed to grasp the full nature of neurological ME and the implications for management, and also failed to provide adequate guidance for diagnosis, specifically not separating ME from CFS and CF.
The NICE Guideline failed to include experts from all the relevant professional groups on the Guideline Development Group .
The NICE Guideline did not study the aetiology and pathogenesis of ME, this meant that thousands of papers could not be discussed as part of the process.
The NICE Guideline ignored the international evidence that ME is a biomedical, not psychiatric, disorder, claiming that stu…

The Care Needs of people with Severe ME

I am delighted to announce that the 25% Group and Stonebird have published a new Care Guide, which you can download, as a Word document, here :

A Reply to the Department of Health

Joint Commissioning Panel for Mental Health, MUS Report
This is my reply to the Department of Health, many thanks for all your comments, which were extremely helpful in formulating my response. (Special thanks to Jerrold Spinhirne.)
---------------------------------------------------------------------------- Thank you for your email dated April 20th. Even though you have stated that the Government recognises Myalgic Encephalomyelitis as a Neurological Disease, patients like my wife are left for decades to suffer, in agony, with no appropriate medical service, no clinical expertise to advise, no investigation, no cure and little hope. The health system does not accommodate or understand their complex needs. Patients with the most severe forms of this illness suffer decades without proper or appropriate input or medical recognition. Rather than identifying the underlying physical cause of illness, discovering the specific under…

A Reply from the Department of Health

April 21 2017 JCPMH Report In response to my recent letter to the Secretary of State, (…/an-open-letter-to-secretar…) the Department of Health have clarified that : " This Government accepts the World Health Organization’s classification of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) as a neurological condition of unknown origin and that health and social care professionals should manage it as such. " The issue, of course, is that people with ME do not receive appropriate medical treatment, rather "best practice" dictates psychiatric therapy; CBT and GET for "maladaptive thinking" and behaviour change. The issue, of course, is that the most severely affected are left to cope in unspeakable agony and suffering with no specialist care, support, advice, investigation, cure whatsoever available. Such a dangerous situation. So outrageous ! The issue , of c…

An open letter to the Secretary of State for Health, regarding the JCPMH MUS Report.

On Feb 9th 2017,the Royal College of Psychiatrists and the Royal College of General Practitioners
 published  "Guidance for Commissioners of services for people with medically unexplained symptoms – practical mental health commissioning" (Joint Commissioning Panel for Mental Health), specifically listing Myalgic Encephalomyelitis as a "Functional Somatic Disorder", in other words a mental disorder.

On Feb 20th, I wrote to the Royal College of Psychiatrists stressing how  Myalgic Encephalomyelitis (ME) is not a mental disorder. It has been recognised by the World Health Organisation since 1969 as an organic neurological disease, classified under ICD code G93.3.

In November 1987 ME was recognised as an organic disease by the Department of Health (Hansard: 27th November 1987:353).  The CMO report of 2002 described ME  as a "genuine illness" which,"imposes a substantial burden on the health of the UK population." On Nov 20 2012 the Countess of Mar…

NICE does not list ME as a Functional Somatic Disorder

In their  letter to me dated March 2nd,the Joint Commisioning Panel for Mental Health  (JCPMH) claim that their "Guidance for commissioners of services for people with medically unexplained symptoms" which lists Myalgic Encephalomyelitis as a "Functional Somatic Disorder", in other words a mental disorder,  is "in line  with NICE guidelines and with current practice."

That is simply wrong.

I wrote  to NICE on March 13  to clarify whether the JCPMH Report is correct in stating that  ME is a somatoform disorder.  They confirmed (March 15) :

"Thank you for contacting the National Institute for Health and Care Excellence (NICE) regarding our guideline chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management (CG53)

We have not listed ME as a functional somatic disorder in the above guideline and unfortunately I am unable to comment on the report issued by the Joint Commissioning Panel for Mental Health."

It is …