Saturday, December 29, 2012

Arise, Sir Simon

PS: This isn't my handiwork. Pity, because it's a masterpiece(s). Creator wants to stay anonymous.

Margaret Williams 29th December 2012:
Arise, Sir Simon

Margaret Williams      29th December 2012

On 6th November 2012 the charity Sense about Science, a sibling of the Science Media Centre, announced that Professor Simon Wessely had been awarded the inaugural John Maddox Prize “for his ambition and courage in the field of ME (chronic fatigue syndrome) and Gulf War syndrome, and the way he has dealt bravely with intimidation and harassment when speaking about his work and that of colleagues” (

Wessely’s plentiful published and spoken views on the psychosomatic nature of ME are well-known, and people will recall that in 2000, Anthony Komaroff, Professor of Medicine at Harvard, said: “There is now considerable evidence of an underlying biological process which is inconsistent with the hypothesis that (ME/CFS) involves symptoms that are only imagined or amplified because of underlying psychiatric distress.  It is time to put that hypothesis to rest” (The Biology of the Chronic Fatigue Syndrome. Anthony Komaroff.  Am J Med 2000:108:99-105).

Twelve years later, Wessely was honoured for his “courage” in continuing to promote exactly that hypothesis (The rewards of science in the UK –

Scientists and others who legitimately and politely challenge Wessely’s disproven beliefs are accused of being part of a “fanatical lobby” (Independent on Sunday: “ME bitterest row yet in a long saga”: 25thNovember 2012) and of being involved in a campaign to undermine his work and credibility (

Indeed, in the above letter that is on the website of the Independent on Sunday, Professor Peter White and his 26 co-signatories confirmed that the “accusations” against Professor Wessely are “false” and that “it was because of accusations like this that Professor Wessely received the award in the first place”.

Now we see that Professor Wessely has been awarded a knighthood in the New Year Honours for his work on Gulf War Syndrome.

It can hardly be forgotten that Wessely has denied the very existence of a Gulf War Syndrome: in their official report published in The Lancet (Health of UK servicemen who served in Persian Gulf War; Catherine Unwin, Anthony David, Simon Wessely et al; Lancet 16 January 1999:353:169-178), the authors claimed they found an association with the “belief” of exposure to a chemical attack, but they failed to identify a specific illness among Gulf War veterans and concluded that there is no such thing as Gulf War Syndrome. In an accompanying supportive article, the late Stephen Straus was categoric: “The cumulative studies now confirm that there is no unique Gulf War syndrome”.

Thirteen years later, acknowledging his honour, Wessely says: “There may not be a distinct illness -- Gulf War Syndrome is a misnomer—Rather it’s an illness or health effect” (Military health expert knighted: 28th December 2012:  Wessely’s comment must be seen in the light of the fact that “illness” is now deemed by some to be a “behaviour” and in order to be afforded legitimacy, one must have a “disease” (The Scientific and Conceptual Basis of Incapacity Benefits (TSO, 2005) written by Gordon Waddell and Mansel Aylward; published by the Department for Work and Pensions).

Nine months after Wessely et al published their negative findings in The Lancet, a two-year study carried out by Dr Beatrice Golomb for the US Defense Department did not support their conclusions.  On 20th October 1999 at 2.20am it was announced on the BBC World Service that, as a result of the Golomb study, the Pentagon had released a statement confirming that it had changed its policy and now admitted that there could be a link with Gulf War Syndrome and the use of pyridostigmine bromide (PB) anti-nerve gas tablets (which UK troops were forced to take during the conflict in the Gulf). This cast significant doubt on the reliability of Wessely’s findings.

Subsequently the 2008 report of the Research Advisory Committee on Gulf War Veterans’ Illness categorically identified concomitant exposure to PB and organophosphate pesticides as causative agents in GWS (see below).

Evidence presented at the Second World Congress on CFS and Related Disorders (including GWS) on 9-12th September 1999 in Brussels included findings in GWS of inadequate cardiovascular support (Professor Ben Natelson); the possible role of environmental factors (Professor Paul Levine); reports of 600 cases of anaphylaxis in US Marines (Professor Garth Nicholson), and evidence that the Gulf War conflict had been the most toxic war in military history (Professor Malcolm Hooper), who told of the injection of vaccines which included biological warfare agents and of exposure to chemical warfare agents including mustard gas and sarin.  When they were ordered to take the NAPS (Nerve Agent Protection Sets) tablets, some troops experienced classic autonomic effects such as sweating and uncontrollable diarrhoea, which resulted in their protection suits being soiled with their own excrement.  In addition there was exposure to depleted uranium (DU) and to toxic smoke from oil-well fires and exposure to solvents and biohazards such as malaria, Leishmaniasis, fleas, scabies, sand flies and mosquitos.

It was easy to design studies which gave the desired result, said Hooper, but there was little doubt that the troops had received a cholinergic triple whammy, and he pointed out that almost the entire cholinergic system would be damaged and/or rendered dysfunctional.  Could a person still function?  The answer was No – the central nervous system was affected, as were the autonomic and peripheral nervous systems.  Hooper discussed various diagnostic tests which ought to have been carried out on the Gulf War veterans, including neurological, immunological, cardiovascular, renal and liver function tests, as well as tests for genetic markers, for assessment of oxidative status, for bone density, for pancreatic and gut function and permeability, and for levels of micro-nutrients (Denigration by Design? Update November 1999:

On his own admission, in his official study of Gulf War veterans, Wessely performed no clinical examination or laboratory investigations.  He worked only from a self-report questionnaire sent only to selected veterans, yet he confidently concluded that there is no such thing as Gulf War Syndrome and the MOD accepted his findings.

In 1999, statistics showed that in the US, 9,000 Gulf War deployed personnel were dead (and these were previously fit and healthy young men) and that there were 230,000 medical cases.  From the UK alone, 53,000 troops were involved in the Gulf War but it was not known how many were ill or dead because the only epidemiological study on UK veterans was the one done by Wessely et al which failed to identify a specific Gulf War Syndrome.

A review of all the epidemiological data by Lea Steele for the Research Advisory Committee on Gulf War Veterans’ illness in Washington DC published on 17th November 2008 found between 25 – 30% of deployed and prepared-for-deployment veterans were sick.  In the UK this equates to 13,000 to 16,000 veterans.  Many of these have died and the remainder live with unacknowledged chronic multi-system conditions with deleterious health and social effects on wives and children.

This 2008 report runs to over 450 pages and contains more than 1,800 references.  Its most important findings are that PB and NAPS tablets were causally linked to GWS and that pesticides, especially organophosphates, were causally linked to GWS.

The report states that GWS has the following features:

  • it is a complex, chronic, organic illness
  • many veterans show evidence of physical brain injury
  • it is not a stress-related condition or due to PTSD
  • features that have been demonstrated by extensive investigations including advanced brain imaging include abnormalities of brain structure (including cancer); impaired function of the autonomic nervous system; cardiovascular and respiratory dysfunction and disease; neuroendocrine abnormalities resulting in serious physical impairment, Parkinson’s Disease, multiple sclerosis and motor neurone disease; altered control of cerebral blood flow; alterations in immune system and function; genetic variation in enzymes responsible for protection against neurotoxins; damage to the skeletal system at tissue and cellular level; increased cancer risk, especially brain, bowel, blood, bone, bladder and lung (associated with the principle toxins and DU)

Notwithstanding this evidence, it seems that nothing has changed the belief of Simon Wessely, the “leading researcher into the health of military personnel” whose work has “dramatically improved mental health services for the Armed Forces” that there is no Gulf War Syndrome.

Perhaps Sir Simon and those who nominated him are unaware of two reports in the journal Neuro-epidemiology that once again seem to prove him to be entirely wrong about Gulf War Syndrome.

A study of meteorological and intelligence evidence tracking the fall-out of chemical weapons and the bombing of chemical weapons stores shows that what the troops reported was correct (though denied by the authorities at the time) and provides direct confirmation of repetitive exposure to low level sarin nerve agent resulting from that fall-out (James J Tuite and Robert W Haley; Neuro-epidemiology 2013:40:160-177).

A companion study shows that exposure to low level sarin nerve agent in fall-out from the bombing  by coalition forces in the initial air war contributed to chronic illness which is “manifested by fatigue, fever and night sweats, memory and concentration problems, pathogen-free diarrhoea, sexual dysfunction, chronic body pain and other symptoms compatible with autonomic nervous system dysfunction and damage to the brain’s cholinergic system, referred to as Gulf War illness” (Robert W Haley and James J Tuite; Neuro-epidemiology 2013:40:178-189).

Is it not curious -- disturbing even – that such honours should be bestowed upon a psychiatrist whose beliefs and doctrine do not accord with the published science and whose beliefs have been so compellingly disproven?

Tuesday, December 25, 2012

Dear Santa

By Joan Mcparland:
Happy Christmas to all my friends. Instead of Christmas cards this year I have donated to ME Research and to The Salvation Army who will home and are feeding a homeless person for £19 over the holiday period. There are two reasons for this, the first is obvious and the second is that we have visited an M.E. patient who is left to live on £71 a week due to benefit cuts. This patient lives alone, has no heat, no food and family who don't understand the illness and say it's just laziness. Members of the support group very kindly gave us bedclothes and food to try to make Christmas a little brighter for this one of many patients left in this intolerable situation this year.

Friday, December 21, 2012

Revalidation Update: why doctors who use or promote CBT or GET for ME/CFS will fail their revalidation

10 years ago, the Belgian government opened their five treatment centres for ME/CFS, the so-called reference centres, to cure 70% of ME/CFS patients with CBT and GET as that is what the Belgian Simon Wessely, psychiatrist Prof. Dr. Boudewijn Van Houdenhove, and his Nijmegen colleagues have been saying for decades.

The Belgian government invested a lot of money, €15 million, but they also reviewed things regularly.

Each review showed that CBT and GET were making things worse.

So, the centres got more time, and more money to improve things.

And after 10 years of treating ME/CFS patients with CBT and GET in five Belgian government centres, it is now crystal clear that CBT and GET make things worse in ME/CFS, which means that CBT and GET harm ME/CFS patients.

the do no harm principle is one of the main principles of medicine, and Revalidation of doctors, which has just started in the UK in the Shipman aftermath, is all about protecting patients against doctors who harm them.

so, the Belgian review of using CBT and GET for ME/CFS for 10 years in five government treatment centres has major implications for revalidation of doctors in the UK as this means that doctors who use and /or promote CBT and /or GET for ME/CFS should fail their revalidation.

See also: CFS Patients Try to Help Researchers Despite The Fact that Researchers try To Kill Them with CBT and GET

See also: Jan 2011, Spanish study shows that CBT and GET make things WORSE in ME/CFS !!!
See also: Journal for Psychotherapy 2011: CBT and GET are ineffective and potentially harmful for many ME/CFS patients

See also: Pacific Labs in California (Snell, Stevens et al): it is dangerous to put patients with M.E. through a graded exercise program

See also: Tom Kindlon's paper: "Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome"

See also: Post-exercise acid exposure 50 times higher in ME/CFS patients vs healthy controls, with no reduction with repeat exercise

See also: PACE trial's Prof Peter White: Exercise causes Immunological damage in Chronic Fatigue Syndrome and is NOT safe

Thursday, December 20, 2012

Emily's death from severe ME prompts Simon Wessely's own charity to give an award to Simon Wessely for decades of ignoring clinical evidence

On Tuesday 6.11.2012, Emily Collingridge was buried. She died from severe MEcfs.

Just hours later Simon Wessely was awarded the Simon Wessely award for vested interest psychiatry for leaving millions of severely ill patients to rot, as Simon Wessely and the other CBT psychiatrist have made sure that there is no proper treatment for this severely disabling neuro immune disease.

Which of the following Simon Wessely charities has awarded Simon Wessely an award?

  • Action for ME 
  • Action for Young people with ME 
  • the MRC 
  • the science media Centre 
  • the RCGP, run by Mrs Simon Wessely a.k.a. Dr Clare Gerada 
  • the BMJ 
  • Sense about Science 
  • the Lancet 
  • Ben Goldenacre 
  • Max Pemberton

See also: The Independent: British psychiatrist Professor Simon Wessely should be stripped of an award, fellow scientists said last night

See also: Another cracker from the CBT school of denial: “The bastards don’t want to get better”…
See also: Harvard Medical School: EEG spectral coherence data distinguish chronic fatigue syndrome patients from healthy controls and depressed patients 
See also: Cerebrospinal fluid profiles can differentiate between Lyme disease, ME/CFS and healthy controls
See also: The main characteristic of ME is an abnormally delayed muscle recovery after doing trivial things, if you don't have that, you don't have ME

See also: The Independent: British psychiatrist Professor Simon Wessely should be stripped of an award, fellow scientists said last night

Friday, December 14, 2012

Pathetic attempts to silence us all

Picture kindly supplied by HR.

From Horace Reid:

From: Wessely, Simon
Sent: 12 December 2012
To: MAR, Countess
Subject: RE: My letter of 5 December 2012

Dear Lady Mar

May I ask, genuinely respectfully, am I writing to you, or am I writing to all the internet?


He and his journalistic catspaws spent the summer of 2011 and the autumn of 2012 stigmatising the ME community in the broadsheets. He purported that he was exposing the "militants". But in fact he and Dr Esther Crawley and others were attempting to silence us all.

All that was public. It was very public.

He abused his power as a prominent member of the medical establishment, to get a platform for his personal perspective on ME, and so far lazy journalism has let him get away with that. The ME patient community was never afforded any proportionate right of reply in the media - until now.

But once the Countess of Mar, Dr. Weir, and Professor Hooper secured a hearing in the mainstream press for the patients, suddenly the "courageous" winner of the Maddox prize gets stage fright.

At the first sign of a fair fight he wants to duck into anonymity.


Wednesday, November 28, 2012

ME isn’t 'all in the mind’, but it’s still a mystery

By Caroline Lavender, 26 Nov 2012,

As medical adviser to the ME Association and an ME sufferer, Dr Charles Shepherd has spent the past two decades vigorously fighting the dismissive attitude still common among the medical profession. Here, he talks about the latest research into the disorder

It was in the late Seventies that Charles Shepherd became ill with myalgic encephalomyelitis, or ME as it is better known. It was an era, he recalls, when the condition was still dismissed as “hysterical nonsense” by most clinicians. Working as a young doctor at Cirencester Hospital, he had contracted a severe case of chickenpox from a patient with shingles. “I’d been perfectly fit and healthy. The infection had resolved but I felt mentally and physically knackered and kept having to take more and more time off,” he recalls.
Shepherd says he has never been truly well since. He “plods along”, though managing to enjoy life: he regularly walks Polar, his snow-white labrador, near the Cotswolds home he shares with his wife Pam, a nurse. On the day we meet, he is helping his daughter Suzie, a student in London, plan her 20th birthday (he also has two sons, Patrick, 28, and Alisdair, 31).
As medical adviser to the ME Association, Shepherd has spent the past two decades vigorously fighting the “all in the mind” attitude which, he says, is still common among the medical profession. He is convinced that this complex disorder, which has puzzled scientists for decades, has biological rather than psychological origins – although unlike some on the militant fringes of the ME community, he prefers to use reasoned persuasion rather than threats when discussing the cause.
“I unequivocally condemn people who send abusive emails,” he says, referring to the harassment of researchers, doctors and journalists – including the Telegraph columnist Dr Max Pemberton – who have speculated on the “psychological” explanation. “But I also understand why people feel so angry. A significant minority of doctors still don’t believe in the existence of ME. They refuse to diagnose or manage it – that is totally unacceptable.”
Now more commonly known as chronic fatigue syndrome (CFS), ME has come a long way since it was derided back in the Eighties as “yuppie flu” (its typical victim supposedly being a high-flying young professional). Today, it is recognised by the World Health Organisation, the National Institute for Health and Clinical Excellence (Nice) and much of the medical establishment as an often severely disabling disease, characterised by a bewilderingly wide set of symptoms, the chief ones being profound fatigue and widespread muscle pain. Difficulties with concentration and memory are also common.
Yet the debate over the cause of ME continues. Is it biological, psychological or a combination of both? The controversy flared up again in September, with the publication of findings finally disproving the theory that ME is linked to XMRV and mMVL, viruses that had previously been isolated in tissue samples taken from ME patients. Scientists at Columbia University, New York, found compelling evidence that detection of the viruses was a result of contamination, corroborating two previous studies’ findings.
The collapse of this theory, greeted with dismay by some ME patients, came as no surprise to Shepherd, who says he was always sceptical of the “hype” surrounding it. “In the US people spent a lot of money getting tested [for XMRV] and getting anti-retroviral drugs, but we have always advised against this because the research [from the University of Nevada, published in 2009, that implicated the virus ] hadn’t been properly evaluated or replicated.”
By taking this stance, Shepherd himself became the target of hate mail. “People get so desperate and put such faith in findings, they find it hard to have them criticised.”
ME researchers now view the illness as having three separate components: first, a (probable) genetic predisposition; second, a precipitating factor – which for 75 per cent of patients is an infection, usually viral, although occasionally other immune stressors such as immunisation may be a trigger; and finally the development of the condition itself. Other signs include fainting, low blood pressure, and irritable bowel syndrome.
The origin of such symptoms remains a mystery. One theory gaining favour is that ME patients have an aberrant immune response which fails to “switch off” after the original infection has resolved itself. In particular, it is possible that some ME patients have a surfeit of cytokines – chemicals produced by the immune system.
Another theory is that an auto-immune response (in which the immune system produces antibodies that attack the body’s own cells) may be involved. Other research is looking at potential abnormalities in the muscles of ME patients, with evidence that some sufferers produce excess acid when they exercise (Shepherd himself took part in research on muscle tissue – and still has a scar on his leg to prove it).
One study at Liverpool University is examining potential structural abnormalities in the mitochondria – cell components which produce energy in a usable form – in skeletal muscle.
A further focus of research are abnormalities in the hypothalamus. This tiny pea-shaped gland in the brain regulates a number of functions including hormone secretion (via the pituitary and adrenal glands). Problems here could help explain symptoms as diverse as sleep disorder, low blood pressure, temperature disturbance and heart, bowel and bladder problems. “A large number of papers demonstrate that ME patients have abnormalities in the hypothalamic-pituitary-adrenal axis,” says Shepherd.
In particular, he says, ME patients have been found to have lower levels of cortisol, a hormone secreted by the adrenal glands. He concedes that ME researchers are still “fitting together the jigsaw puzzle”, with some way to go before treatments are developed. “We have reached a point where there are drugs that would be worth trialling,” he says. But clinical trials are expensive to run and the pharmaceutical industry, the only realistic source of such funding, has shown little interest.
In the meantime, can graded exercise (a programme aimed at building up activity levels) and cognitive behavioural therapy, advocated by Nice, help with the symptoms? “The Nice guidelines on ME are not fit for purpose,” Shepherd argues. “They reflect the belief that this is a psycho-social illness.” He himself is a fan of pacing – a technique which involves listening to your body to find the right balance between rest and activity. “I go swimming and walking, but within the limits of what I can do.”
He also feels progress has been stymied by rebranding ME as chronic fatigue syndrome. “Doctors never liked the term ME because it refers to inflammation of the brain and spinal cord, which has never been found,” he says. “But calling it CFS has made research trickier because CFS is an umbrella term for different pathologies – it’s a bit like grouping together all the different kinds of arthritis and saying they have the same cause.” He prefers the term myalgic encephalopathy, which reflects a significant neural abnormality in the brain.
He is encouraged, though, by progress at the Medical Research Council, where an expert group to encourage high-quality research into ME was set up in 2008, and where, last year, £1.5 million was ring-fenced for this purpose. So far funding has been approved for five studies – among them mitochondrial function and cytokine production in muscle tissue, immune system involvement and autonomic dysfunction.
So is Shepherd discounting entirely any psychological component in ME? “I have no problem,” he replies, “with the idea that the mind affects the body and the body affects the mind. Of course, people who are chronically ill get depressed and have psycho-social stress. But the point is that too much energy and money has gone into research based on the belief that ME is psycho-social – when the right route is biomedical.”

Tuesday, November 27, 2012

The Independent: British psychiatrist Professor Simon Wessely should be stripped of an award, fellow scientists said last night


A British psychiatrist should be stripped of an award, fellow scientists said last night, as one of the most heated debates in medical science continued.

Professor Simon Wessely, one of Britain's foremost experts on ME, won the John Maddox Standing up for Science honour earlier this month. The prize was created by the journal Nature and the charitable trust Sense about Science. It was given to Professor Wessely for "courage" in speaking out about his studies into ME in the face a prolonged hate campaign and death threats. The Chinese science writer Fang Shi-min shared the award.

But critics protested against the decision last night. They said the professor's work perpetuates the idea that myalgic encephalomyelitis, also known as chronic fatigue syndrome (CFS), is a mental health problem, trivialising what they claim is a largely physical illness. Malcolm Hooper, emeritus professor of medicinal chemistry at Sunderland University, said: "He's responsible for trying to make ME into a psychiatric condition when it's not. He has done very poor science."

Another opponent, the Countess of Mar, said: "I was absolutely horrified when I read he'd won the award and I would like to see it retracted."

Dr William Weir, a retired consultant physician who says ME is caused by a chronic viral infection, called the decision "almost satirical". "If the scientific data is properly examined it will be seen that Professor Wessely's doctrine is wrong and it will be proved to be wrong in about five years' time," he said.

Monday, October 29, 2012

Emily Collingridge, 1981-2012: her funeral will be held on 6 November 2012

by Tony Britton on October 28, 2012:
Emily Collingridge’s funeral will take place on Tuesday, 6th November 2012 at 12.45pm.

Her parents, Jane and Jim, wish for it to be a private ceremony but say, “ We know that people will be thinking about Emily and holding her in their hearts as they are so touchingly doing at the moment.”

As many people will want to pay tribute to Emily, the following suggestions for a virtual funeral have been put forward by some of her friends and approved by her parents:

1) Light a candle at some point on the day of the funeral. For those too ill to tolerate candlelight, a picture of a candle could be looked at instead, or a candle simply imagined.

2) Read, or have read to you, some of the pieces below. In the first Emily’s mother, Jane, shares her memories of Emily. Two quotes have also been chosen as reflecting Emily’s spirit. All can be found below.

As Emily was a dedicated campaigner, we also suggest the following as a means of raising awareness of ME:

3) Change your Facebook profile photo (and cover photo if you are on Timeline) to the rose picture below. This can be done on the day of the funeral or before. A suggested caption for the photo is: ‘In memory of Emily Collingridge’ with ... Read more>>

Wednesday, October 17, 2012

Jessica Taylor's video: The World of One Room

A personal story of a young girl growing to a young woman suffering with the severest form of this debilitating neurological illness.

A message of hope and a belief in recovery with a plea for us not to forget ME - it's time the world woke up!

Friday, October 5, 2012

Thanks to Max Pemberton for highlighting significant neuroanatomical brain changes in ME/CFS which proves yet again that ME/CFS is a physical disease

Max Pemberton wrote: “These ME sufferers pointed out that brain scans have shown possible neurological changes as evidence that their illness wasn’t psychological, completely failing to understand that such scans show significant changes in every psychiatric disease, too.”

So I asked him over a week ago the following question via twitter:

@MaxPemberton "brain scans show significant changes in every psychiatric disease, too"
Which psychiatric diseases Dr Max ?

As he hasn't answered I will answer the question myself.

As he is talking about all psychiatric diseases, I can choose any psychiatric disease I like.

So I will choose the following four:
Depression, burnout, hysteria and exercise phobia.

If a brain scan is abnormal in hysteria, then the diagnosis is wrong, and we call it MS.

If a brain scan is abnormal in depression, burnout or exercise phobia then either the diagnosis is wrong or these people have a physical disease as well as a psychiatric one.

So thanks again to Max Pemberton for highlighting significant neuroanatomical brain changes in ME/CFS which proves yet again that ME/CFS is a physical disease.

MRI study: significant neuroanatomical brain changes in ME/CFS, which proves yet again that ME/CFS is a physical disease

Sunday, September 30, 2012

FDA: "ME/CFS is a serious or life threatening disease”

Voices from the Shadows, on September 29, 2012:
Dr Sandra Kweder MD, Deputy Director, CDER Office of New Drugs, stated  in response to Terry Gilmete

“ We consider your condition to be in the category of serious or life threatening diseases.

Okay, so all of the measures to move things through rapidly, all of the tools that we have here at FDA to try and expedite reviews or expedite development and work with companies to try and encourage them along that would apply to, you know, immediately life threatening cancer, as far as we’re concerned they apply to this condition.

This is a serious condition and I just want to make that clear. We consider it in the same category because there are no approved treatments for this condition and we understand how seriously and severely peoples’ lives are impacted by this disease – by this condition.” Read more>>  

FDA plans drug development to treat Myalgic Encephalomyelitis and Chronic Fatigue Syndrome (ME/CFS)

Tuesday, September 25, 2012

American Cancer Society: increased risk of non-Hodgkin lymphoma in ME/CFS, proves again that ME/CFS is a physical disease

Chronic fatigue syndrome and subsequent risk of cancer among elderly US adults

Cindy M. Chang PhD, MPH1, Joan L. Warren PhD2, Eric A. Engels MD, MPH1

Article first published online: 30 MAY 2012 DOI: 10.1002/cncr.27612

Copyright © 2012 American Cancer Society


  • lymphoma;
  • chronic fatigue;
  • cancer;
  • etiology



The cause of chronic fatigue syndrome (CFS) is unknown but is thought to be associated with immune abnormalities or infection. Because cancer can arise from similar conditions, associations between CFS and cancer were examined in a population-based case-control study among the US elderly.


Using linked Surveillance, Epidemiology, and End Results (SEER)-Medicare registry data, approximately 1.2 million cancer cases and 100,000 controls (age range, 66-99 years; 1992-2005) were evaluated. CFS was identified in the period more than 1 year prior to selection, using linked Medicare claims. Unconditional logistic regression was used to estimate the odds ratios (ORs) comparing the CFS prevalence in cases and controls, adjusting for age, sex, and selection year. All statistical tests were 2-sided.


CFS was present in 0.5% of cancer cases overall and 0.5% of controls. CFS was associated with an increased risk of non-Hodgkin lymphoma (NHL) (OR = 1.29, 95% confidence interval [CI] = 1.16-1.43, P = 1.7 × 10−6). Among NHL subtypes, CFS was associated with diffuse large B cell lymphoma (OR = 1.34, 95% CI = 1.12-1.61), marginal zone lymphoma (OR = 1.88, 95% CI = 1.38-2.57), and B cell NHL not otherwise specified (OR = 1.51, 95% CI = 1.03-2.23). CFS associations with NHL overall and NHL subtypes remained elevated after excluding patients with medical conditions related to CFS or NHL, such as autoimmune conditions. CFS was also associated, although not after multiple comparison adjustment, with cancers of the pancreas (OR = 1.25, 95% CI = 1.07-1.47), kidney (OR = 1.27, 95% CI = 1.07-1.49), breast (OR = 0.85, 95% CI = 0.74-0.98), and oral cavity and pharynx (OR = 0.70, 95% CI = 0.49-1.00).


Chronic immune activation or an infection associated with CFS may play a role in explaining the increased risk of NHL. Cancer 2012. © 2012 American Cancer Society.

Friday, September 21, 2012

The Daily Mail: ME is no more 'in the mind' than Multiple Sclerosis

Sonia Poulton:
19 September 2012 9:03 PM

ME is no more 'in the mind' than Multiple Sclerosis. When is the world going to get that?
Ever since I first wrote on the subject of Myalgic Encephalomyelitis - or to afford it a more user-friendly title, ME - earlier this year for MailOnline,  I have been overwhelmed by the response from patients and their loved ones.

The over-riding message I have received has been one of gratitude. I can tell you that this is something of an unusual experience for a journalist writing for national newspapers.

These people have Facebook-ed and Tweeted me. I have received calls and e-mails. There have been forums addressing the article and pictures and cards received which outlined a sense of relief for millions of people.

Many of these voices – including some of the greatest scientific, legal and academic minds in the ME world – have echoed a collective sigh to see their illness validated in the media.

The very notion that the media, and the press in particular, can actually serve a positive purpose in society may come as a surprise. But sometimes it does. And my piece, according to the phenomenal response that greeted it, was just one of those times.

Here's why. For decades, people who have suffered the debilitating – and sometimes fatal – condition of ME have been forced into a type of denial.

They have been told that their illness doesn't really exist on the scale that they claim to experience it (due, in part, to it being labelled a 'chronic fatigue syndrome'. A highly controversial description because it creates an image of something substantially less than what ME actually is).

They have been told, repeatedly, to 'pull themselves together' and to 'G.E.T. A G.R.I.P.' (a vile acronym actually used to describe the graded exercise prescribed, wrongly, to ME patients).

In short, it is not enough for people to have to endure serious multi-system issues that can leave them bed-bound for months at a time, but they are also made to feel bad for, well, feeling bad.

What an injustice.

From the insight I have gained into the ME world, I cannot overstate the consequences of such a twilight-type existence. One in which your body responds a specific way but you are told that it isn't actually possible. That it's not really happening. That you are imagining it.

And that myth, of it 'being in the mind' has been perpetuated worldwide.

Millions of sufferers have been left in the dark to deal with their illness. Sometimes, if they are fortunate, they will be supported by their loved ones - who are also in need of support, too – but often they are left to deal with it alone.

For those reasons, certainly, many ME patients may suffer depression but it is not the other way around - and it is deplorable to suggest it is.

It may surprise you to learn that I have detractors or, as modern parlance would have it, haters. These people troll me on the internet as if their lives depended on it.

Around about now they will be making comments like 'get the violins out - here comes a sob story'. Well, ME is a sob story. And the way patients have been portrayed is grossly wrong and that injustice must be recognised as such.

In my experience, they are anything but cranks or victims but people who have simply waited too long to have the truth of their experience recognised.

And that, partly, arrived yesterday with the launch of the Lipkin Study, a significant multi-centre study into ME.

Chances are you may think otherwise for, as is common with any major ME announcements, there were a number of misleading reports prior to the press conference.

Subsequently, representatives from the ME society have announced their intention to pursue media outlets and seek rectification of some articles that have emerged.

In short, much of the media misunderstood the Lipkin study findings. Partly because some reports jumped-the-gun and took information from rumours and speculation rather than wait for the official announcement. But, it also occurred because the mis-information fed into already-established prejudices.

Many people, and for whatever reason, want to believe that ME is nothing more than feeling a little world-weary and tired.

It is nothing of the sort. It is a neurological condition that savages the body. People die from ME and millions across the world are being mistreated and misdiagnosed as a consequence of poor and hostile reporting.

Yesterday's announcement – that ME was not a result of the XMRV virus – seemed to herald, to some, the idea that ME is not the result of any virus but is, infact, a psychological condition.

Wrong. Wrong. Oh, and for good measure, wrong again.

Many highly-respected and learned people have compared the overall devastation of ME to illnesses including Multiple Sclerosis and even AIDS - and with good reason.

Dr. Charles Shepherd of the ME Association responded to the misleading idea that ME cannot be contracted by any virus by saying:

“There is, in fact, a great deal of robust anecdotal and research evidence to demonstrate that a number of specific infections - examples include enteroviruses, dengue fever, glandular fever, hepatitis, parvovirus, Q fever, Ross River virus - trigger ME/CFS.”

Many ME sufferers like Dr. Shepherd have little doubt that their illness was triggered by one of these viruses. The problem has been getting it recognised and appropriately treated.

This is poor response, certainly, and even more so when you factor in that the World Health Organisation acknowledged it as a neurological condition over 30 years ago, then it becomes more than a little alarming.

But there have been powerful forces at play that have served to maintain the status quo on ME thinking, and they have proven more than a challenge to be reckoned with.

For the past 60 years, the illness has been hijacked by the psychiatric community as one of 'theirs'. They have clutched ME to their collective bosom and have refused to release the iron-grasp on it.

This wholesale insistence of it being something that can be overcome with the right attitude has been highly detrimental to those who actually matter in this debate: the people who are suffering with it.

As a consequence, ME patients have been failed in terms of adequate treatment and significant funds are dove-tailed into Cognitive Behavioural Therapy and, even worse, Graded Exercise – which has been shown to have a detrimental impact on the health of ME patients.

The problems about treating a physical illness in a psychological manner are brilliantly explored in Angela Kennedy's 'Authors Of Our Own Misfortune?' which tackles the topic with some considerable aplomb.

What we are dealing with here is a systematic neglect of ME patients - and we should be under no illusion about that.

Equally, we must be sure to tackle it - medically and in the media - without hysteria or bile.

One of the reasons that ME patients are so vocal is because <b>the mis-information of their illness has resulted in a dangerous delay of appropriate research and treatment</b>. If that were you, would you be quiet about it? I certainly would not!

So yes, ME is a modern-day scandal. The way it has been portrayed is shocking. The Lipkin study, despite its detractors, will enable a deeper exploration of the illness and how it impacts and ravages bodies and lives.

And, to the relief of ME sufferers worldwide, that understanding cannot come a moment too soon.


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