Greg Crowhurst’s response to the Draft Terms of Reference for the APPG’s proposed inquiry into NHS services for people with ME:
Letter to Des Turner MP
14 November 2008
(May be Reposted)
On behalf of my wife, a severe ME sufferer, I write to express our concerns about the APPG Draft Terms of Reference.
We cannot agree with the APPG’s extraordinary assertion that the CMO Report “raised expectations of major improvements in the provision of primary and secondary healthcare services for people with ME.”
The CMO Report 2002 acknowledged that people with severe ME/CFS in the UK currently receive “seriously inadequate health care” , however the Report has made little difference to the lives of people with severe ME.
In 2002 the Countess of Mar predicted that the impact of the CMO Report would be to compound:
. Inaction in not investigating the patient’s illness or not providing any treatment – for the Report’s emphasis was on management, not treatment – and this, worryingly, appears to also be the main focus of the APPG
. Ignorance by promoting inappropriate and possibly harmful interventions
. Denial of the true nature of ME.
She noted back then how the CMO Report was met by a “deafening silence”- and five years later that silence is still ringing out.
MERGE (2002)’s criticism of the CMO Report at the time were shared by many in the ME Community:
. Its remit was too narrow which “ensured that the focus is on containment and coping, rather than on solving the clinical conundrum, namely, what actually causes the illness and what steps can be taken to elucidate the cause. This, in our opinion would be a pertinent question for the APPG to be asking.
. It did not unpack the vague and too-wide diagnostic construct “CFS” – if the Inquiry continues to use the term Encephalopathy, then the APPG will simply perpetuate this and be deemed to be supporting the confusion.
. It recommended Cognitive Behavioural Therapy and Graded Exercise Therapy, based on “less than conclusive evidence” and despite the fact that the “specific efficacy of neither is convincingly supported by the systematic review evidence, and nor is the pragmatic efficacy supported by survey reports from CFS/ME patients.” Yet this is what is being perpetuated through NICE, which the draft terms make central to the Inquiry, despite every major ME Charity agreeing the NICE Guideline is unfit for purpose and despite them being under Judicial Review. This makes no apparent sense then.
. It did not systematically analyse the significance of the large body of research literature outlining the numerous biological abnormalities, pathophysiological mechanisms and the range of clinical signs and symptoms exhibited by ME patients Yet this is exactly what is needed and is still missing.
. It presented to “the media , the public, and opinion formers that the best that can be done is to manage symptoms, most prominently with psychological strategies.” This Inquiry is in danger of doing just this too.
. It recommended inappropriate management strategies for the severely affected who remain a “neglected challenge”. This requires a new and innovative approach, based on a sound biomedical paradigm.
The draft terms of reference currently proposed would do nothing to unearth the issues that you seek to address, because, for example the PCTs are concerned with following NICE and NICE currently does not make the recommendations demanded by severe ME sufferers.
From a survey I conducted of severe ME patients in Norfolk and Suffolk, in 2007, it is clear that sufferers want biomedical input that is currently not on offer:
Severe ME sufferers do not want:
A behavioural “therapy”-led service
To be “lumped in” with other undefined chronic fatigue illnesses and states.
A psychosocial model of care.
To be offered psychosocial CBT/GET ‘treatments’, as these have been shown to be dangerous for severely affected patients and cause setback and worsened prognosis for milder cases of ME.
To be patronised by ill-informed medical professionals who do not believe that they have a physical disease.
To be downgraded and treated as if their very real and severe neurological symptoms, such as paralysis, spasms, parasthesia and pain are insignificant or psychiatric in origin.
To be offered psychiatric – originated management techniques, charading as treatment for this physical illness.
To be described as “tired”.
A fudging or a pretending to meet the needs of people with ME, but actually working to a psychiatric paradigm that is rooted in vested interest and based upon pseudo-science and flawed patient selection criteria.
Any service based upon the Fukuda or Oxford criteria.
There needs to be a more refined questioning, in our opinion, to bring out these deeper underlying issues. Asking about current services, from current service providers is unlikely to bring about the validation that patients want; that biomedical services are not in place.
The danger is that all you will get from people providing services is a desire for more money to do more of it. Most national ME Champions, we understand, are psychiatric/psychological in their approach, therefore the PCTs are unlikely to have a wider view of what is possible.
There is a great danger that this will skew the results especially if you do not clarify the difference between “CFS” and “ME”.
If you want to get a true impression about the reality of services for people with severe ME, most sufferers are unlikely to be receiving a service and therefore any information you get from a service is unlikely to reflect their needs and demands. Our Norfolk/Suffolk study showed, for example, that 50% of the most ill patients with severe ME in Norfolk and Suffolk are receiving no service at all and only six patients, out of twenty one (29%), say they are receiving a supportive ME service from their GP.
Is this Inquiry supposed to be for people with ME or for a wider, less clearly-defined, disparate group of people including Chronic Fatigue, which is a mental health issue: because that is the likely information you will get back from the current clinics .
Under the draft terms of reference the information you get back could easily be misinterpreted especially given that the Terms of Reference, only focus upon diagnosis, therapy and management; potentially negating the pressing need for treatment, research and in-depth testing.
Unless the term “biomedical” is specifically emphasised in these Terms of Reference the Inquiry will not be able to establish clearly enough that NHS Provision is inappropriate, not because there is not enough money to provide CBT and GET, which is the likely message, but because appropriate biomedical input is utterly lacking and apparently not even on the agenda.
What is the intention of the Inquiry, is it to validate the Clinic’s biopsychsocial approach or is it to genuinely seek information regarding NHS provision for Myalgic Encephalomyelitis ? There is a great divide between the two. People with genuine neurological Myalgic Encephalomyelitis want biomedical research, proper, in-depth biomedical testing and treatment , not the façade of treatment currently deemed “management” that is currently on offer at the clinics and this awareness needs to be reflected in the Terms of Reference.
My wife’s health is deteriorating and there is no biomedical service in existence that will currently meet her needs. She does not want to die from ME and she wants this travesty of service provision to be uncovered and changed. She asks that you please make sure that the Inquiry genuinely seeks to address the needs of the most severely affected.
Greg Crowhurst 14 November 2008
Countess of Mar (2002) preface to Unhelpful Counsel? MERGE’s response to the Chief Medical Officer’s Working Group report on CFS/ME. April 2002
MERGE (2002) Unhelpful Counsel? MERGE’s response to the Chief Medical Officer’s Working Group report on CFS/ME . April 2002
Crowhurst G (2007) EAME/25% Group Survey of the Severely Affected in Norfolk and Suffolk www.metrainingco.org.uk