Monday, 26 January 2015

Re: Tackling fears about exercise is important for ME treatment, analysis indicates

24 January 2015
Margaret Williams
Retired from clinical post in the NHS

The BMJ is to be congratulated for advancing medical science in respect of ME/CFS by encouraging free discourse as contained in the many pertinent rapid responses relating to the publication of the latest laboured attempt by the Principal Investigators to rescue the UK PACE trial (1).

As is clear from those responses, nothing can salvage the PACE trial. Furthermore, the current iteration of the NIH Pathways to Prevention Statement deals the coup de grace by calling for the Oxford criteria (used in the £5 million trial) to be retired (2) and the CFSAC has gone further by calling for studies using the Oxford criteria no longer to be used to inform treatment recommendations for this disease (3).

How many of the clinicians who remain dismissive of ME/CFS because they have been misled by the media hype over the trial’s exaggerated recovery rates are aware that Professor Jose Montoya from Stanford (whose major study of the immune system in ME/CFS is underway) has declared ME/CFS to be an inflammatory autoimmune disorder?

His words should form part of every medical school curriculum: “There is a genetic predisposition for an overwhelming inflammatory response to an infectious agent that was supposed to help the patient but is overwhelming, triggering a tremendous inflammatory cascade” (4). No amount of directive “cognitive restructuring” and graded exercise can result in “recovery” from such a multi-system inflammatory disease process.

It is now eight years since the Presiding Officer (Speaker) of the Scottish Parliament summed up the principal concerns of the Scottish Cross Party Group, which was that “the cold grip of psychiatry is still far too deeply rooted in the world of ME” (5). Not before time, this cold grip is starting to loosen.

Ioannidis defines bias as: “the combination of various design, data, analysis and presentation of factors that tend to produce research findings when they should not be produced….Scientists in a given field may be prejudiced purely because of their belief in a… theory or commitment to their own findings…Such conflicts may lead to distorted reported results and interpretations”.

He continued: “ History of science teaches us that scientific endeavour has often in the past wasted effort in fields with absolutely no yield of true scientific information…Of course, investigators working in any field are likely to resist accepting that the whole field in which they have spent their careers is a ‘null field’ ” (6).

The day is surely approaching when it will be conclusively shown that the psychosocial lobby have spent their ME/CFS careers in a “null field”.

2. The US National Institutes of Health (NIH) Pathways to Prevention Workshop Draft Statement:“Advancing the Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome” December 2014
4. Chronic Fatigue Syndrome: Wrong Name, Real Illness
5. Defiance of Science? Professor Malcolm Hooper et al. July 2007
6. Professor John P.A. Ioannidis. Why Most Published Research Findings Are False. PLoS Medicine 2005:2:8:e124

Competing interests: No competing interests

Monday, 19 January 2015

Rational understanding of the symptoms of ME/CFS 

The paradigm which states that the symptoms of ME have a psychological basis continues to be promoted (Lancet Psychiatry 2015: ). Most recently “exercise phobia” has been proposed as part of the problem, although a study of which I was a co-author in 2005 explicitly disproved this proposition (J Psychosom Res 58 (2005): 367-373). This paradigm has no plausible scientific basis and can only be described as a doctrine whose adherents continue to ignore the biomedical evidence which amply confirms the organic basis of the condition. As someone with nearly 30 years’ experience of seeing patients with this severely disabling condition I continue to be dismayed by an irrational adherence by the psychological lobby to a doctrine that is not supported, even  by their own studies, and which has been  undermined by the published biomedical evidence.

The term “phobia” implies an irrational fear of exercise. The reason that ME sufferers avoid exercise is because they know from (sometimes bitter) experience that it makes them feel worse (often much worse) and results in post-exertional malaise (PEM). This is one of the cardinal features of the condition and can last for days, often for weeks and not uncommonly, for months. PEM is not imagined and causes a rational apprehension of exertion which should no longer be labelled as “phobia”. ME sufferers therefore avoid exercise for reasons which are entirely rational, and Dr Mark VanNess’ recent work (now replicated elsewhere) has put much flesh on the bones of this argument.

As a simple analogy, a newly broken leg causes pain and most people so affected have an entirely rational fear of walking or even bearing weight on the affected limb. The pathophysiological basis of pain caused by a fracture is well understood, and now Dr Van Ness’ work has provided considerable insight into the pathophysiology of PEM. Not only do his findings give a clearer understanding of this  devastating symptom of ME but they also effectively dispose of the argument that ME patients have “exercise phobia” or indeed that the disease is caused by patients wrongly believing they are physically ill.

Unfortunately, promotion of the doctrine that ME/CFS has a psychological basis continues to be disseminated by the inappropriately named “Science” Media Centre. They are not, in respect of ME, disseminating science at all, and continue to promote scientifically unsustainable and disproven theory, simultaneously ignoring proper scientific evidence. Sadly this is not an abstruse controversy, and patients whose genuine incapacity continues to be attributed to the psychological paradigm suffer enormously. I regard this as morally indefensible.

W.R.C.Weir FRCP, FRCP (Edin), Consultant Physician, 10 Harley Street, London W1G  9PF

Dr VanNess on recent press reports

Recent media headlines would have us believe that "fear of exercise" hinders our treatment.  The papers have each taken slightly different but equally damning headlines:

"Chronic fatigue syndrome patients’ fear of exercise can hinder treatment - Study" The Guardian
"Chronic fatigue syndrome sufferers 'can benefit from exercise'" The Independent
"Exercise can help with ME, scientists say" BBC
"Sufferers of chronic fatigue syndrome ‘can benefit from exercise’" The Irish Independent
"Chronic fatigue victims 'suffer fear of exercise': Patients are anxious activities such as walking could aggravate the condition" Mail Online
"ME: fear of exercise exacerbates chronic fatigue syndrome, say researchers" The Telegraph

What is written behind the headlines is no better.  Patients were understandably outraged! 

The Newry and Mourne ME Fibromyalgia Support Group have spent much time and effort trying to ensure that medical professionals understand the real physiological problems that ME patients have with aerobic exercise, and less than a year ago Dr Mark VanNess eloquently explained these problems to a packed house in Stormont, Belfast. (More detail here)

Joan McParland (founder and co-ordinator of the Newry and Mourne Group) therefore wrote to Dr VanNess to ask for his response to the these press reports.

The group are delighted that Professor Mark VanNess has agreed that we can share his response.  We certainly hope it will help clear up any misunderstanding about exercise for ME patients.  His letter is quoted below:

"Dear Joan,

I was saddened to see the press releases regarding the ME/CFS studies from Kings College London. It seems to me they’ve once again missed important nuances of the disease. Nearly all ME/CFS sufferers would either avoid or drop out of any experiment that employed exercise as a treatment because they know it exacerbates symptoms. The remaining subjects would either be very high functioning or consist of fatigued individuals that were incorrectly diagnosed as ME/CFS. Our studies clearly show that dynamic exercise like walking or jogging exacerbates symptoms associated with ME/CFS.

Fear and avoidance of what worsens symptoms is a natural defense mechanism against a harmful stimulus. In fact, many researchers here in the U.S. utilize graded aerobic exercise as a tool to worsen and amplify ME/CFS symptoms – not as a treatment meant to be beneficial. The therapeutic interventions we use are meant to improve quality of life for ME/CFS patients. These interventions focus primarily on strengthening muscles and improving range of motion; activities that get energy from normally functioning anaerobic metabolic mechanisms rather than impaired aerobic energy pathways. We even provide tools like heart rate monitors to help patients avoid significant aerobic exertion.

Fear of exercise is an understandable response in ME/CFS. For a patient with ME/CFS the fear of exercise is a reasonable, knowledgeable, and learned response to a noxious stimulus. If ME/CFS patients could exercise away their symptoms they most certainly would, regardless of the pain. But that is not the case. Our exercise physiologists carefully avoid aerobic exercise (which worsens the pathologies) and focus activity programs that utilize intact metabolic pathways with strength training and recumbent stretching (that help alleviate symptoms). These exercise recommendations are consistent with our understanding of ME/CFS pathology.

We would all hope that ME/CFS was viewed with attention given to immunological, metabolic, cardiovascular and neuroendocrinological dysfunction that has been demonstrated with previous research.

Good luck to you and your organization as you help us all accurately portray this illness.


J. Mark VanNess, Ph.D.
Professor; Departments of Health and Exercise Science and Bioengineering
University of the Pacific
Stockton, California, USA"

Friday, 9 January 2015

Countess of Mar tells House of Lords that people with ME/CFS are treated “abominably” by caring professions

Countess of Mar tells House of Lords that people with ME/CFS are treated “abominably” by caring professions | Lords debate | 7 January 2015

From the M.E. Association –

The Countess of Mar, who chairs the Forward ME Group of ME charities, made the following contribution during a short debate on NHS: Medical Competence and Skill in the House of Lords yesterday evening (7 January 2014).

My Lords, I, too, am grateful to the noble Lord, Lord Parekh, for introducing this Question for Short Debate this evening.

I encounter almost daily cases where people with ME/CFS and others with medically unexplained physical symptoms, known as MUPS, are treated abominably by members of supposedly caring professions. For example—and it is by no means an isolated example—a young man of 17 had problems with tolerating foods since he was a small baby. Standard tests could provide no clear reason. By the time he was 16 he was diagnosed by consultant paediatricians at both St Thomas’ and Great Ormond Street hospitals as being extremely reactive to almost all foods and was restricted to a prescribed liquid diet, as none of the consultants had any other resolution. Eventually he was admitted to an environmental medicine polyclinic, where I am also treated, where he has been treated with low-dose immunotherapy and nutritional supplementation. Over a period of a few months, from being able to tolerate no foods he is now eating 33 different foods with few problems.

On his 17th birthday, he went out with some friends for a meal and during that night he developed very severe abdominal pain and, after his GP had refused to visit, his mother managed to get him to the polyclinic. There acute appendicitis was diagnosed and immediate admission to his local hospital in Oxford was recommended. The paediatric consultant’s first response was to ask, “What has the mother of this boy done now?”. On arrival at the hospital the consultant informed the mother that he knew that nothing was wrong with the boy but he would keep him for observation. He scheduled a scan and then went home for the weekend. The boy was left screaming and in acute pain for a further 24 hours, without pain relief or other medication. By the time he was operated on, his appendix had perforated, making treatment much more complex than necessary.

To this day, despite all the evidence of the extremity of his reactions to foods and the failure of our two flagship hospitals to treat this young man’s condition, his Oxford consultant insists that there is nothing wrong with him, that he should stop the polyclinic treatment and that he should eat a normal diet, apparently because standard allergy tests do not provide confirmation. This results in great stress and distress to the boy and his mother.

In fact, substantive evidence in numerous publications proves that the safety and efficacy of immunological changes after treatment with oral immunotherapy for cow’s milk allergy, nut allergy, allergic rhinitis, wheat desensitisation and other specific foods and chemicals is well recognised. The treatments are validated and are neither experimental nor complementary medicine.

I have long wondered why there should be such particularly unreasonable treatment for people with MUPS and I have come to several conclusions. Medicine is supposed to be a very rewarding profession, whether the practitioner is a doctor, nurse or ancillary worker. The patient consults, the doctor diagnoses and prescribes and the patient gets better or at least no worse. On the occasions when the patient’s condition deteriorates and he or she dies, it is usually because the illness is well understood and this is part of a normal process. This is clearly not the case with MUPS. Modern doctors are highly reliant on technology. Test reports taken at face value can dominate the diagnostic process without taking into account factors such as clinical presentation and history and the possibility of false positive or negative results. Additionally, medical practice has become a cost-benefit calculation, with treatments either enforced or rejected on this basis rather than on patient need. I have the distinct impression that, because some doctors and other medical practitioners fail to understand some disease processes, they grow impatient, even intolerant, when their patient fails to respond and then they blame the patient.

The skills that medical practitioners acquire during training are essential to good practice for the rest of their working lives. Unfortunately, the natural scientific curiosity of the profession seems to be stifled in the course of their training. There are still far too many medical professionals who hold that MUPS are “all in the mind” and that patients simply need to pull themselves together, perhaps with the help of a little cognitive behavioural therapy. Somehow, current research findings are not filtering down to doctors who deal with patients.

Are the time constraints on appointments and the dependence on technology reducing a doctor’s ability to listen and to communicate effectively? Is it because GPs and consultants work such long hours that they have neither the time nor the energy to do their own research on problems concerning chronically ill patients? Is it because complex investigations cost money and initial investigations come back as being within normal ranges that the current view is that further tests would not be cost effective? Or is it because doctors have become so demoralised that they can see no reason to go the extra mile on behalf of their patients?

The NHS is excellent for acute management of illness because clear guidelines are usually followed assiduously by all staff. Chronic complex conditions are problematic because clinicians seem to deal with only one symptom at a time. Specialisation means that patients with ME/CFS are rarely looked at holistically. I have heard of one doctor’s surgery with a notice on the door which reads, “One complaint at a time”. The trouble is that frequently it is the combination of symptoms which will point to a clear diagnosis.

I have confined my speech to one aspect of competence and skill, one which falls far short of the excellence that should be the norm. I am interested to hear how the Minister proposes to improve the position for some 250,000 patients with ME/CFS and the many more who have other medically unexplained symptoms.

The debate was answered by the Parliamentary Under Secretary of State for Health, Earl Howe, and the full text can be read HERE.

Friday, 2 January 2015

An M.E. Spring ???

By Greg Crowhurst

As another year of agony threatens to grind us into awful nothingness, as I hang dishevelled with bleeding fingertips,  digging deep, wrecking my brain, trying to inject, with a breaking heart, a little hope and optimism, I find by accident, a reference by Hooper and Williams, to something I wrote a long time ago :

“In a paper dated 8th March 2008 entitled “The Year of No Compromise” Greg Crowhurst, a health care professional whose wife is one of the most severely affected ME/CFS sufferers in the UK, said the following

“This is a simple summary of the inferred messages underpinning the psychiatric paradigm, currently being heavily promoted in the UK”.

….Crowhurst’s summary exactly captures the situation in the UK:

“The recommendations:

  • do not investigate ME patients
  • do not provide special facilities for ME patients other than psychiatric clinics
  • do not offer special training to doctors about the disorder
  • do not offer appropriate medical care for ME patients
  • do not offer respite care for ME patients
  • do not offer State benefits for those with ME do not conduct biomedical research into the disorder

The tactics:

  • the wreaking of havoc in the lives of ME patients and their families by the arrogant pursuit of a psychiatric construct of the disorder.
  • the attempts  to subvert the international classification of this disorder from neurological to behavioural
  • the propagation of  untruths and falsehoods about the disorder
  • the building of affiliations with corporate industry
  • the insidious infiltration  of all the major institutions
  • the denigration of those with ME

The practices: 

  • the attempt to make "ME" disappear in a sea of chronic fatigue
  • the refusal to see or acknowledge the multiplicity of symptoms
  • the ignoring and misinterpretation of the biomedical evidence
  • the suppression of published findings
  • the vested interests      

The impact:

  • the arresting and sectioning of protestors
  • the silencing of ME patients, through being given a psychiatric label
  • the suppression of dissent
  • the labelling of ME patients as the "undeserving sick", as malingerers
  • the forcible removal  of sick children and adults from their homes.

Seven years later things have not changed !

Significantly though last summer Professor Mark Baker,  Director of the Centre for Clinical Practice at NICE,  stated in July 2014 that the current Guideline for “ME/CFS” does not :

  • meet the needs of people with ME - or NICE's needs either.
  • address the real issues in ME
  • promote innovation
  • has had a “disappointing” impact on specialist care and commissioning issues.

..and that  “something” is needed to steer patients away from dangerous neglect and towards expert diagnosis and treatment.

Well, that is progress ! However, as I write in the latest  25% Group Christmas Magazine :

"I turn to the lonely wall and I am thinking to myself, when are the campaign groups going to face-up to the fact that whatever we throw at the Psyches, the NICE’s... , they just absorb with a great big belly laugh. Rant and rave all you like on the internet and they agree with you, with a sly twinkle. Your concerns, your outrage, your petitions they will even sign up to, while slapping you on the back, with a dagger in their hand. "

Even so - as Baker's extraordinary admission last year indicates, we ARE making progress. There IS reason for hope.

But we HAVE to discover a new radicalism !! It has been a long, long road. Many of us are beyond worn-out, it is such a struggle surviving.

Could this year be an ME Spring ? Alone among all the Charities that have sold us out, the 25% Group is taking a stand this year, inviting patients to share their experience of ME, so that "we can wake up the powers that be to the reality of patient experience."

Yes, yes !!! Patient experience is EXACTLY what is required, especially in this Election Year in the UK; exposing the reality of what is happening as opposed to the psychiatric rhetoric is a long overdue. Why has this initiative not happened sooner ??

Please support the 25% Group.

Make THIS the year you say "NO MORE, not for a MINUTE more am I going to put up with this " !!!!

Make this the year you make a formal complaint about your dire lack of treatment !!!

Make this the year you ACT !!

Please, please take a stand this year : on behalf of us all.

Thursday, 1 January 2015

New Year Greetings

A Very Happy New Year to all readers of my blog, your families and friends.

C H Spugeon's Morning Devotional for the 1st January

"They did eat of the fruit of the land of Canaan that year."

Joshua 5:12

Israel's weary wanderings were all over, and the promised rest was attained. No more moving tents, fiery serpents, fierce Amalekites, and howling wildernesses: they came to the land which flowed with milk and honey, and they ate the old corn of the land. Perhaps this year, beloved Christian reader, this may be thy case or mine. Joyful is the prospect, and if faith be in active exercise, it will yield unalloyed delight. To be with Jesus in the rest which remaineth for the people of God, is a cheering hope indeed, and to expect this glory so soon is a double bliss. Unbelief shudders at the Jordan which still rolls between us and the goodly land, but let us rest assured that we have already experienced more ills than death at its worst can cause us. Let us banish every fearful thought, and rejoice with exceeding great joy, in the prospect that this year we shall begin to be "for ever with the Lord."

A part of the host will this year tarry on earth, to do service for their Lord. If this should fall to our lot, there is no reason why the New Year's text should not still be true. "We who have believed do enter into rest." The Holy Spirit is the earnest of our inheritance; He gives us "glory begun below." In heaven they are secure, and so are we preserve in Christ Jesus; there they triumph over their enemies, and we have victories too. Celestial spirits enjoy communion with their Lord, and this is not denied to us; they rest in His love, and we have perfect peace in Him: they hymn His praise, and it is our privilege to bless Him too. We will this year gather celestial fruits on earthly ground, where faith and hope have made the desert like the garden of the Lord. Man did eat angels' food of old, and why not now ? O for grace to feed on Jesus, and so to eat of the fruit of the land of Canaan this year!