Tuesday, 24 January 2017

Children with ME need relevant science, not pressure to do more, more, more


By Jenny Horner on 24th January, 2017

An advocate and campaigner living with ME explains why she opposes Bristol University’s trials on children with the condition.

In November, Bristol University made national headlines for a £1m trial attempting to treat child ME sufferers using a specific form of cognitive behaviour therapy (CBT) over the internet. In chronic conditions, talking therapies can be useful support for the uncertainty and loss caused by illness. However, CBT is being used differently in ME with a strong agenda to increase activity, without treating the underlying disease. Bristol is also trialling a controversial ‘graded exercise therapy’ (MAGENTA).  As an ME sufferer myself, I am deeply troubled to see the continued use of approaches to treat ME that can harm sick children instead of helping them.

The hallmark of ME is an exacerbation of symptoms following physical or cognitive exertion. The repercussions are usually delayed by a day or two and sometimes a relapse can be indefinite. One day I was out walking my dog on the Downs, the next day I was struggling to sit up in bed. Biological findings into ME (myalgic encephalomyelitis) involve the immune system, metabolism and mitochondria. There seems to me no logical explanation for how this could be reversed by CBT or graded exercise.

At the 2016 conference for the International Association for Chronic Fatigue Syndrome/ME, the only CBT-focused study (larger than Bristol’s FITNET-NHS one) concluded that “findings suggest that individuals do not reduce activity level due to illness beliefs, as proposed by the cognitive behavioural theory of CFS… exercise-based interventions lack empirical justification”. The nature of patient opposition to the Bristol trial also includes similar studies failing to report differences at long-term follow-up, poor definition of ME/CFS and reliance on subjective measures.

Graded exercise therapy is more controversial still and reports more harm than benefit in patient surveys. In one ME Association survey 74% reported harm, including starting to need a wheelchair and becoming bed/housebound. Patients aren’t made aware of these risks and if you become severely affected there is no antidote or effective treatment available.

Child studies usually need to be justified by beneficial adult evidence. MAGENTA is based on an infamous £5m study (known as the ‘PACE trial’), which is cited as an example of bad science. In this study patients could get worse yet be classed as ‘recovered’. It is no basis for an ethical trial on children.

Exciting developments, such as appropriating cancer drugs, are showing good results for ME. Patients in this country want to see what little research money there is focused on well-designed biomedical studies, not another £1m of public money targeted at repetitive psychosocial trials.

Adults with ME feel that our views on these issues are usually ignored or caricatured. Children with ME have even less of a voice.

Find out more about the issues and petition Parliament about graded exercise therapy: www.stopGET.org


Wednesday, 18 January 2017

A Travesty Of Science And A Tragedy For Patients: Quotable Quotes Continued 2006 – 2016

This is a long document, so I have just posted the first section. To download and read the whole document, please go to –


A Travesty Of Science And A Tragedy For Patients: Quotable Quotes Continued 2006 – 2016

This document is in 4 sections: Professors Wessely, White, Sharpe and the PACE Trial

Compiled by Margaret Williams

17th December 2016

To assist the reader, as this document is quite lengthy, notable sentences have been highlighted in yellow.

In his power-point presentation on 29th June 2011 about the PACE Trial for the “Forward ME” meeting at The House of Lords, Professor Malcolm Hooper referred to the ME situation in the UK as: “The 3 Ts – Travesty of Science; Tragedy for Patients and Tantamount to Fraud”.

The tragedy for ME patients in the UK existed long before the PACE Trial: it has existed for the last three decades. Can it be attributed to the zealous proselytizing by certain psychiatrists – all of whom are involved with the medical insurance industry and who deem themselves “experts” on ME/CFS - to convert non-believers to their own beliefs about the nature of it?

As in “Quotable Quotes Updated” (which provided examples of unhelpful comments about people with ME/CFS from 1988 to 2005 emanating from psychiatrists Professors Simon Wessely, Peter Denton White and Michael Sharpe and can be accessed at www.margaretwilliams.me), this continuation provides more illustrations of their published views on ME/CFS from 2006 to 2016. It is not comprehensive but merely representative.

In order to understand the effect on patients with ME of the Wessely School’s beliefs and their total disregard of the mainstream biomedical evidence-base that has been shown to underpin the disorder (evidence which vitiates their beliefs), it is essential to be aware of that evidence-base, particularly of the widespread inflammation and the proven immunological, cardiovascular, endocrine, gastrointestinal and musculoskeletal dysfunction, summaries of which can be accessed at www.margaretwilliams.me

One would have expected that these psychiatrists would have kept up-to-date (which doctors are required to do) but their views have remained intransigent (ie. They continue to insist that ME/CFS is a behavioural disorder and that patients who believe they suffer from a physical disease perpetuate their own “perceived” ill-health).

Although some of these quotations are from ten years ago, they were published during the planning/execution of the PACE trial, whose interventions of CBT and GET were predicated on these psychiatrists’ beliefs. 

To continue reading the document, go to 



Saturday, 14 January 2017

A psychosomatic diagnosis is a doctor’s way of saying, “I don’t have a clue”


Written By Jamison Hill

For the last six years, I have fought to legitimize an illness widely—and erroneously—believed to be “all in your head.”

I have myalgic encephalomyelitis, a debilitating multi-system disease that the Centers for Disease Control and Prevention conservatively estimates afflicts more than one million Americans. It is commonly known as chronic fatigue syndrome, a truly trivializing name that belittles what I and other sufferers live with. (Though it is preferable to the condescending term “yuppie flu.”) Doctors have told many people with the disease—including myself—that there is no treatment, and more often, that what we are experiencing is merely a manifestation of the mind.

The latter is the basis for psychosomatic theory, which is the idea that the mind can produce diseases. Diseases commonly thought to be psychosomatic—such as irritable bowel syndrome and Crohn’s disease—can pummel a healthy, thriving member of society without any indication of how. This theory became popular in the US in the early 20th century; Sigmund Freud is the most well-known name associated with it, who maintained that “hysteria” could cause any number of physical illnesses.

Similar theoretical concepts like somatoform disorder suggest that the body can only cope with a finite amount of mental factors before physical symptoms, like headaches, begin to show. But there is a substantial difference between an acute problem like a stress-related headache and claiming that a serious chronic illness is psychosomatic. With the exception of chronic migraines, a headache is generally considered to be an acute symptom, not a chronic illness.

The theory of psychosomatic illness is flawed. Many serious illnesses are initially tagged as psychosomatic because they are too complex for doctors to offer a singular explanation or because the patients have no physical symptoms. There may be a connection between the body and mind—the brain is, after all, an anatomical feature of the body—but this does not mean that physiological diseases can be manifested through mental factors. For example, a 2007 commentary published in the Journal of the American Medical Association concluded that while stress can be a factor in some diseases, “a causal relationship” could not be found.

Dr. Dale Peterson, former president of the Oklahoma Academy of Family Physicians, is even more adamant that physiological disease cannot be caused by mental factors. “Psychological and sociological dynamics may predispose an individual to illness or cause an illness to be much more severe, but other factors must be present to trigger the condition,” he says.

The idea that a disease can be generated from the mind not only lacks scientific evidence—it is belittling to those who suffer from physical illnesses. As Dr. Peterson explains, for someone in the medical field to say a physiological illness is psychosomatic is merely “a professional way of saying I don’t have a clue!”

I contracted myalgic encephalomyelitis after a bad case of mononucleosis in 2010 (an illness often jokingly referred to as the “kissing bug”). Within the first year, my condition had deteriorated to the point where I could no longer take care of myself; I had become bedridden, and eventually lost my ability to speak, eat, tolerate light, or lift my head off the pillow. Through a daily regimen of oral anti-viral medication and IV treatments, my health eventually started to improve. I can now speak polysyllabic words, chew soft food, and sit up in bed to see the sunlight streaming across my room.

But these improvements have had nothing to do with changes in my mental state; I did not will them to happen. Instead, my body was given the proper medicine to improve its physiological impairment.

Regardless, many doctors still disregard my ailments as some form of psychosomatic illness. But sometimes technology just isn’t advanced enough in order to reveal the true underlying physical symptoms behind a disease. For example, until the invention of the MRI in the 1970s, multiple sclerosis was believed to be a form of “hysterical paralysis.” Likewise, some forms of autism, particularly in children, were once thought by some psychologists to be due to a lack of maternal nurturing. Similarly, until inflammation could be measured, asthma was also commonly blamed on overbearing mothers. We all now know that these three diseases have true, physiological causes—not mental ones.

While these illnesses have largely overcome psychogenic theories, other physiological illnesses still face similar stigmas: Inflammatory conditions like Crohn’s disease, stomach ulcers, and irritable bowel syndrome (IBS) still carry psychosomatic overtones—usually stress-related—even though they have been proven to have physiological origins. Researchers at the University of Edinburgh, for instance, have compiled an overview of studies that link Crohn’s disease to factors such as genetics, immune function, and gut bacteria, not psychogenesis.

A lot of this misinformation has spread widely throughout popular culture despite being proven scientifically unsound. For example, a study published in 2011 in the Lancet, a prestigious UK medical journal, used psychosomatic theory to claim that cognitive behavioral therapy (CBT) substantially benefited people with myalgic encephalomyelitis. The study, known as the PACE trial, was eventually debunked and proved to be the product of bad science—but not before it had influenced public-health services to adopt treatment models, many of which actively harmed patients by prescribing exercise to severely ill patients based on psychogenic models.

There is hope, however. After all, multiple sclerosis and autism have managed to transcend the stigma of outmoded psychosomatic theory. But until the government and medical establishment realizes that psychosomatic theory has no place in modern medicine, diseases like mine will continue to be stigmatized, trivialized, and dismissed.

Wednesday, 4 January 2017

From Norway to Norwich – IiMER Rituximab Trial Update


Haukeland Team to Visit UK for Rituximab Trial Planning and Public Talks

Dr. Øystein Fluge and Dr. Ingrid Rekeland from Department of Oncology and Medical Physics Haukeland University Hospital, Bergen, Norway, will be joining Professor Simon Carding from the Institute of Food Research (IFR) and University of East Anglia, for an event being held at The Assembly House in Norwich on 26th January, from 6.30pm to 9pm.

The meeting is open to the public and and the talks will be CPD-accredited.

Admission is free and places may be reserved by contacting Invest in ME Research by using the contact form on their website, or by emailing the charity at info@investinme.org with subject title Dr Øystein Fluge Public Talk.

The public meeting will be a great opportunity for awareness of ground-breaking biomedical research into ME (Myalgic Encephalomyelitis) of the highest quality.

However, the main purpose of the visit by Dr. Fluge and his team is to discuss the UK clinical trial of rituximab as a treatment for ME, planned to be conducted in Norwich, the hub of the Invest in ME Research Centre of Excellence for ME. From an article on IFR News and Events –

Dr Øystein Fluge, a senior consultant and oncologist at Haukeland University Hospital in Norway will be talking about ground-breaking research he is leading on Rituximab. This drug has been used to treat leukaemia and lymphoma, as it targets B-cells, a type of blood cell. In 2004, Dr Fluge noticed that ME patients being treated for lymphoma with Rituximab also saw substantial improvements in their ME symptoms. Subsequently pilot studies and a randomised, blinded, placebo controlled study also showed positive results, with a large, multi-site Phase III clinical study now running.

Dr Fluge is visiting Norwich to collaborate over another Rituximab trial being carried out on the Norwich Research Park. Professor Simon Carding from the Institute of Food Research (IFR) and University of East Anglia will also be talking about at the event about this, as well as research in his own group, who are looking for causes and treatments for ME in the gut and its microbial communities. The Norwich Research Park is establishing itself as a hub for biomedical research into ME, in the UK and Europe and through international collaborations.

Read in full at 

  

Monday, 2 January 2017

Happy New Year

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

C H Spurgeon’s morning devotional for 2nd January –


"Continue in prayer."

Colossians 4:2

It is interesting to remark how large a portion of Sacred Writ is occupied with the subject of prayer, either in furnishing examples, enforcing precepts, or pronouncing promises. We scarcely open the Bible before we read, "Then began men to call upon the name of the Lord;" and just as we are about to close the volume, the "Amen" of an earnest supplication meets our ear. Instances are plentiful. Here we find a wrestling Jacob-there a Daniel who prayed three times a day-and a David who with all his heart called upon his God. On the mountain we see Elias; in the dungeon Paul and Silas. We have multitudes of commands, and myriads of promises. What does this teach us, but the sacred importance and necessity of prayer? We may be certain that whatever God has made prominent in His Word, He intended to be conspicuous in our lives. If He has said much about prayer, it is because He knows we have much need of it. So deep are our necessities, that until we are in heaven we must not cease to pray. Dost thou want nothing? Then, I fear thou dost not know thy poverty. Hast thou no mercy to ask of God? Then, may the Lord's mercy show thee thy misery! A prayerless soul is a Christless soul. Prayer is the lisping of the believing infant, the shout of the fighting believer, the requiem of the dying saint falling asleep in Jesus. It is the breath, the watchword, the comfort, the strength, the honour of a Christian. If thou be a child of God, thou wilt seek thy Father's face, and live in thy Father's love. Pray that this year thou mayst be holy, humble, zealous, and patient; have closer communion with Christ, and enter oftener into the banqueting-house of His love. Pray that thou mayst be an example and a blessing unto others, and that thou mayst live more to the glory of thy Master. The motto for this year must be, "Continue in prayer."