Defeated ? Not this Carer.

Defeated ? Not this carer.
(Response to
Alastair M Santhouse, Matthew Hotopf, and Anthony S David
Chronic fatigue syndrome
BMJ 2010; 340: c738 http://www.bmj.com/cgi/eletters/340/feb11_1/c738)



I have spent the last sixteen years caring full time for my wife who has very severe ME. The greatest challenge those of us who seek treatment for their loved ones face, is the ongoing struggle to get ME removed from its association with generalized fatigue states.

Far from feeling “defeated”, however, there is a real sense that at last the tide is beginning to turn our way ; that the world is finally waking up to the true horror that is ME.

Those of us who have fought so long for biomedical recognition are buoyantly optimistic. This editorial shows how it is the psychiatrists, whose “unproven beliefs and assumptions are presented as fact” (Hooper 2010) who face defeat ; how they have nothing to offer the severely affected , except an increasingly discredited , vapid, ideology, that has so destroyed lives.

Have Santhouse et al any idea what a struggle everyday life is like for the severe ME sufferer ? My wife describes how : "Having severe ME is unimaginable ; the experience is so different , intense and unremitting than anything I have ever experienced before. I am never unaware of the range of symptoms that rage through my body , and are dominated by intense never ending pain in every millimetre of my skin and muscles, over and throughout my whole body; head shoulders, back, front , arms legs, hands , feet, toes , fingers, eye lids , scalp the soles of my feet, the tip of my nose , my eyebrows even. They all burn, throb, tingle, itch, and hurt in ways indescribably unbearable , along with other unusual sensations"

As Dowsett (2006) points out , : “ME/CFS affects more Americans than AIDS, lung cancer and breast cancer combined, more people than have multiple sclerosis or cystic fibrosis, and costs the U.S. more than $9.1 billion annually in lost productivity. More importantly, nearly 90% of patients have not been properly diagnosed. Recovery rate is poor, estimated between 5% and 10% of patients attaining total remission. Patients can be as functionally impaired as those suffering from diabetes, heart failure and kidney disease, and are often as severely disabled as those with heart failure, late-stage AIDS, MS, patients undergoing chemotherapy, and COPD (chronic obstructive pulmonary disease). “

Given the level of concern raised not just by patients but professionals, listed by Williams (2009) , about NICE’s irrelevance to neurological ME , Santhouse et al’s recommendation of CBT and GET for the severely affected is breathtaking:

Association of British Neurologists: “it almost seems that a select group of psychiatrists with a polarised view of this complex condition is directing the development of the guideline from ‘behind the scene’ ”

Association for Psychoanalytic Psychotherapy in the NHS :“It is highly misleading to state that CBT is the therapy of first choice, since the only relative efficacy RCT quoted in the Guideline shows that counselling has better outcomes than CBT.”

British Association for Counselling and Psychotherapy (BACP): “responses to the Action for ME Membership Survey rate CBT and GET as the least helpful of a range of interventions...”

British Dietetic Association: “It is unhelpful to simply state that ‘Exclusion diets are not generally recommended for the management of CFS/ME’ when irritable bowel symptomatology is quite common in this illness.”

Chartered Society of Physiotherapy: “If 50% get worse with GET, why suggest it as first line of treatment?” College of Occupational Therapists: “The College has serious reservations about the suitability of this Guideline.”

ME Research UK: (Commenting on “…CBT is an evidence-based treatment for CFS/ME…). It is not. The evidence base consists of only five trials which have a validity score of less than 10.”

National CFS/ME Observatory: “The belief that evidence-based guidelines can be constructed on such an inadequate evidence base is, in our opinion, misguided.”

National Coordinating Centre for Health Technology Assessment: “NICE largely pays lip service to the principle of consensus, with patient evidence being viewed as biased and virtually ignored”.

NHS Plus: “the advice given to maintain exercise even when there is an increase in symptoms is potentially harmful and dangerous, and the supposed negative effects of deconditioning would be negligible in comparison”

Royal College of Paediatrics and Child Health: “There is a danger in relying solely on information from systematic reviews of clinical and randomised trial reports for non-pharmaceutical treatments that are not easily defined or replicated, such as CBT and GET.”

Royal College of Physicians of London: “We think that this is a potentially dangerous statement (ie.) that with increases in CFS/ME symptoms, exercise or physical activity should be maintained to avoid the negative effects of deconditioning. We are not aware of any clinician who would make this recommendation, except in a very mildly affected patient.”

Sheffield South West Primary Care Trust: “The narrow focus of the NICE Guideline may lead to helpful approaches being undermined and patient preference / clinical judgment being undervalued. All clinicians do not subscribe to the ‘CBT model of CFS/ME’, and (it) does not seem to be well received by many ME Support Groups either”.

(Source Williams 2009)

Significantly, NICE (NICE “2007)does not recommend CBT and GET for people with Severe ME, who are excluded from Criterion 7 of its August 2007 Audit Criteria ; those ME patients “provided with cognitive behavioural therapy and/or graded exercise therapy as a treatment approach.”

My wife has not known one single moment free of throbbing, screaming pain, a host of neurological symptoms and intense, unfathomable suffering, in the last 16 years.

Santhouse el al’s article will only contribute to the abuse, neglect and disbelief that ME sufferers and Carers have to deal with.

One day though, the depth of the ME medical scandal will be revealed, especially with 5000 published medical papers and recent cutting -edge research into the XMRV retro-virus, dispelling once and for all the myth that ME is a psychiatric condition.

Defeated ? Not this carer .

References :

Dowsett B (2006) ME/CFS Epidemiology & Epidemics www.name- us.org/ResearchPages/ResEpidemic.htm

Hooper M (2010) Magical Medicine: How to make a disease disappear, PRESS RELEASE: MEDICAL RESEARCH COUNCIL, http://www.meactionuk.org.uk/magical-medicine.htm

NICE (2007) Audit criteria Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy)

http://www.nice.org.uk/nicemedia/pdf/CG53AuditCriteria.doc.

Williams M (2008) A NICE Dilemma http://www.meactionuk.org.uk/A_NICE_DILEMMA.

Margaret Williams 2009 : Examples of concerns raised by professional bodies about the NICE (draft) Guideline CG53 on “CFS/ME" http://meagenda.wordpress.com/2009/03/13/examples-of-concerns-raised-by- professional-bodies-about-the-nice-draft-guideline-cg53-on- %E2%80%9Ccfsme%E2%80%9D/

Competing interests: None declared

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