Thursday, 27 February 2014

MEA chairman Neil Riley unpicks a central thread in the PACE Trial

MEA chairman Neil Riley unpicks a central thread in the PACE Trial

26 February 2014

‘Recovered’ – or do you only feel better?

“I feel so much better today, I’ll go back to work”. Ah, those halcyon days before you had ME. You were ill, you rested, you got better. Put simply, you had recovered.

So when a trial of treatments for people with ME/CFS reports that many of them had “recovered” you would imagine shouts of joy throughout the ME community. But joy there was none and for good reason. “Recovery” as defined in the PACE Trial, involving the use of Cognitive Behaviour therapy (CBT) and Graded Exercise Therapy (GET), is not what you think it is.

In medical trials there are ways of measuring your physical abilities and the SF-36 Function Scale is one that’s often used. It’s useful in comparing the burden of different diseases, differentiating the health benefits produced by different treatments, and in screening individual patients.

A score of 85 or above on that scale indicates that an adult, even one who was previously ill, is able to carry out most everyday tasks. The Pace Trial took as patients, adults with CFS/ME who had a point score of 65 or less, so they were clearly ill. They were given CBT and GET.

Now common sense suggests to me that if the treatments had worked well, those patients would have recovered. Their SF36 score would be 85 or over and off to work they would go. Singing merrily as they went. Well, I was wrong.

Originally PACE said that a score of 85 would indicate their patients had recovered their function but later decided achieving a score of 60 was sufficient. So patients could enter the trial “severely disabled” with a score of 65 or less and exit the trial “recovered” with a score of 60. Yes, you read that correctly.

Some could be as ill at the end of their treatments as they were when they started, yet, says PACE, they had “recovered” their physical function.

PACE does a wonderful sleight of hand here by claiming that as the fatigue score for patients showed improvement then that constituted recovery. Imagine you have just finished treatment for an illness and you’re asked: “How do you feel?” You might say: “I feel much better today thanks”. Feeling “much better thanks” is, as we know, not the same as “recovered”.

If I still can’t go back to work, play football or score my 85 points, then I’m not sure I’d feel “recovered” even if I didn’t feel as knackered as before.

Did PACE check their recovery measures by asking patients scoring 60 if they had recovered? Well, blow me down with a feather, they did not. Here’s a suggestion, dear researchers. Why not go back and ask those patients if they can now do what they did before they were ill.

Why is this important to you? Because the treatment you get from your GP is often based on trials. If those trial results are not founded on common sense but on inappropriate formula on the wrong set of data, what use are they? We live in a world where common sense rules, not in the world of PACE where “recovery” is not what it seems.”

This article first appeared in ME Essential, the quarterly magazine of The ME Association, in February 2014.

A new article from Professor Malcolm Hooper - 

ME/CFS is an organic disorder (27 February 2014)

Wednesday, 26 February 2014

ME and Chromosome Damage and Exercise Intolerance

National CFIDS Foundation's Research Finds Chromosome Damage in Patients Diagnosed with Chronic Fatigue Syndrome and Myalgic Encephalomyelitis

Press Release — February 25th 2014

The National CFIDS Foundation (NCF) has announced its latest research findings for chromosome damage in its fifteen-patient cohort.  According to Gail Kansky, NCF President, "We feel that our grant funding for Dr. Henry Heng has really paid some big dividends due to the fact that our selected patient samples displayed several key chromosome abnormalities."  According to Kansky, "I would like physicians and patients alike to realize that these results indicate that this disabling disease is not malingering nor is it simple fatigue.  It certainly isn't 'all in your head' either.  In fact, chromosome damage can't be fixed by graded exercise!  Our patients are very ill and they are most concerned about cancer development and rightly so."

Dr. Heng, who headed up this research, is an Associate Professor of Molecular Medicine and Genetics at Wayne State University.  Heng was the principle research investigator involved in the Discovery Channel's "Conspiracy Test" documentary in 2007.  Heng had tested five Gulf War veterans for chromosome damage using spectral karyotyping.  He had subsequently identified chromosome damage, at much higher levels than controls, in each one of them.  Interestingly, every one of those veterans had previously tested positive for urinary uranium radionuclides.

In 2010, the NCF announced its link between Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) and low-level radiation exposure.  According to Alan Cocchetto, NCF's Medical Director, "We had tested a group of patients for the presence of specific internal radionuclides.  This research data was formally analyzed by Dr. Carmel Mothersill, Canada Research Chair in Environmental Radiobiology and Professor of Medical Physics and Applied Radiation Sciences at McMaster University.  This same patient group then became the NCF's patient cohort that was subsequently tested for chromosome damage by Dr. Heng."

Using spectral karyotyping, Heng had found that 100% of the NCF's patient samples had an order of magnitude greater chromosome breakage than controls.  In fact, these patients had greater breakage than those veterans tested in "Conspiracy Test."  Furthermore, 53% of the NCF's cohort had been identified as having chromosome translocations, often considered to be a recognized stepping stone as part of the cancer initiation process.  In addition, Heng had also identified a new type of chromosome damage that was present in the NCF's samples.  Heng's research was funded by both the National CFIDS Foundation and the Nancy Taylor Foundation for Chronic Diseases.

According to the NCF, Chronic Fatigue Syndrome (CFS) is also known as Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) as well as Myalgic Encephalomyelitis (ME).  Founded in 1997, the goals of the NCF are to help fund medical research to find a cause and to expedite appropriate treatments for CFIDS/ME.  The NCF, an all volunteer 501(c)(3) federally approved charity, is funded solely by individual contributions.  Additional information can be found on the Foundation's website at  or in The National Forum quarterly newsletter.  The NCF can be reached by phone at 781-449-3535.

Decreased oxygen extraction during cardiopulmonary exercise test in patients with chronic fatigue syndrome


Background: The insufficient metabolic adaptation to exercise in Chronic Fatigue Syndrome (CFS) is still being debated and poorly understood.

Methods: We analysed the cardiopulmonary exercise tests of CFS patients, idiopathic chronic fatigue (CFI) patients and healthy visitors. Continuous non-invasive measurement of the cardiac output by Nexfin® (BMEYE B.V. Amsterdam, the Netherlands) was added to the cardiopulmonary exercise tests. The peak oxygen extraction by muscle cells and the increase of cardiac output relative to the increase of oxygen uptake (ΔQ’/ΔV’O2) were measured, calculated from the cardiac output and the oxygen uptake during incremental exercise.

Results: The peak oxygen extraction by muscle cells was 10.83 ± 2.80 ml/100ml in 178 CFS women, 11.62 ± 2.90 ml/100 ml in 172 CFI, and 13.45 ± 2.72 ml/100 ml in 11 healthy women (ANOVA: P=0.001), 13.66 ± 3.31 ml/100 ml in 25 CFS men, 14.63 ± 4.38 ml/100 ml in 51 CFI, and 19.52 ± 6.53 ml/100 ml in 7 healthy men (ANOVA: P=0.008). The ΔQ’/ΔV’O2 was > 6 L/L (normal ΔQ’/ΔV’O2 ≈ 5 L/L) in 70% of the patients and in 22% of the healthy group.

Conclusion: Low oxygen uptake by muscle cells causes exercise intolerance in a majority of CFS patients, indicating insufficient metabolic adaptation to incremental exercise. The high increase of the cardiac output relative to the increase of oxygen uptake argues against deconditioning as a cause for physical impairment in these patients.

Thursday, 20 February 2014

Bristol Exercise and ME/CFS evening a success

The ‘Exercise and ME/CFS – the evidence’ evening in Bristol went extremely well. It was oversubscribed  - completely packed with around 120 people – despite terrible weather, massive traffic jams and extensive flooding in Somerset. Prof Mark VanNess, Dr Nigel Speight and Erinna Bowman all gave very good presentations after a 30 min version of ‘Voices’ showing 4 young people’s stories of how mismanagement of their illness had caused severe deterioration in their health. The event was filmed and will be available to watch online soon. There were professionals from three CFS/ME centres –  Bristol adults, Bath children and adults and Somerset CFS Service – as well as from two Bristol Universities, a wide variety of other medical professionals, disability advisors and many patients, carers and parents from nearby and far afield.

Thank you to all those who helped in various ways – to Joan McParland who spent two years planning how to bring Mark VanNess to the UK, to Shass Blake whose North Bristol Support Group hosted the event, to the Quartet Foundation who gave a substantial grant, to MERUK who helped fund their spokesperson Sue Waddle who chaired the event, to the ME Association for helping fund Dr Nigel Speight their paediatric Medical Advisor and Erinna Bowman from the Biobank’s expenses. Thank you to Duncan Cox, Cath Ross, Nicki Strong & Sandy Shott for helping in different ways and to the families who offered financial help, if needed. Thank you especially to Nigel, Sue and Erinna who give their time so freely and repeatedly to help patients. The feedback after the event from both medical professionals and patients and carers has been excellent. The presentations are being prepared for viewing and will be available to watch here very soon. Prof Mark VanNess’s presentation will also soon be available on the Workwell Foundation website, but in the meantime they have  presentations available by other members of the research team – Chris Snell and Staci Stevens – under video links.

Introduction to the film shown on Feb 5th. at the Watershed - Natalie Boulton

We finished the ‘Voices from the Shadows’ film 2 and  half years ago and actually started it a couple of years before that, so most of the interviews are now quite old. Unfortunately they are no less relevant now than they were then, as Nigel will explain later.

The first interview we did, was with Simon Lawrence who founded and runs the 25% Group for severely ill ME patients. It was difficult to film and he was far more ill than we’d expected.  One of the things he said, that I didn’t really want to hear, was that over the years he had seen many, many people progressively become more and more ill  and many had died – he had lost many friends, he said, although, this was invariably put down to other conditions as being the cause of death.

Over the last 6 or more years I have been in contact on and off with a small group of young people, through my daughter, most of whom took part in the book Lost Voices from a Hidden Illness or the film. They mostly became ill as children or young adults. I have seen or rather heard of their progress over the years. Two of these, who were my daughters friends, are now dead. Another who I keep in quite close contact with has gone from being up on his feet and going out for short trips, to being completely bed bound, unable to get to the the toilet even with an electric wheelchair, unable to watch a computer screen or TV, unable to read and unable to have his hair cut or to shave – as you will see in his photo in the film.

This is a shocking film. But when we started to do the interviews we had absolutely no idea how shocking and frightening the accounts would be. I thought, from making the the ‘Lost Voices’ book that I had some idea of what was going on – but what we were told in interviews was a revelation. It became clear that these accounts were part of a coherent picture that needed to be told – The story of how physically ill children and young people, had been encouraged, persuaded, coerced, and even physically forced as a last resort, to conform to a view of this illness which is now proved to be utterly misguided and false -  even though it is still being widely promoted.

This 30 minute version of the film contains 4 accounts of young people with ME. There is Naomi who tells her own experiences along with her mother Elizabeth and her brother and sister. Kay Gilderdale recounts how her daughter became so severely ill, Criona tells us what happened to her daughter Sophia. Sophia herself recorded some of the material we used. The child we refer to as B needs to remain unidentifiable and remains severely ill and traumatised by what was done to her. The room shown is not even her own room, we created it largely using my daughters possessions but I am told it is surprisingly similar. The account her parents wrote is read by an actor. Photos of other severely ill young people are shown while the ME specialists speak.

This film makes an impact on people, not because it is particularly well made, but because of the total sincerity and honesty of the people in it. We filmed them as witnesses, to hear what they needed to say, not to make an argument – and a tragic story emerged.

Saturday, 15 February 2014

To Him be glory both now and forever

C H Spurgeon’s Morning Devotional for 15th February

"To Him be glory both now and forever."

2 Peter 3:18

Heaven will be full of the ceaseless praises of Jesus. Eternity! thine unnumbered years shall speed their everlasting course, but forever and for ever, "to Him be glory." Is He not a "Priest I for ever after the order of Melchisedek"? "To Him be glory." Is He not king for ever?-King of kings and Lord of lords, the everlasting Father? "To Him be glory for ever." Never shall His praises cease. That which was bought with blood deserves to last while immortality endures. The glory of the cross must never be eclipsed; the lustre of the grave and of the resurrection must never be dimmed. O Jesus! thou shalt be praised for ever. Long as immortal spirits live-long as the Father's throne endures-for ever, for ever, unto Thee shall be glory. Believer, you are anticipating the time when you shall join the saints above in ascribing all glory to Jesus; but are you glorifying Him now? The apostle's words are, "To Him be glory both now and for ever." Will you not this day make it your prayer? "Lord, help me to glorify Thee; I am poor, help me to glorify Thee by contentment; I am sick, help me to give Thee honour by patience; I have talents, help me to extol Thee by spending them for Thee; I have time, Lord, help me to redeem it, that I may serve thee; I have a heart to feel, Lord, let that heart feel no love but Thine, and glow with no flame but affection for Thee; I have a head to think, Lord, help me to think of Thee and for Thee; Thou hast put me in this world for something, Lord, show me what that is, and help me to work out my life-purpose: I cannot do much, but as the widow put in her two mites, which were all her living, so, Lord, I cast my time and eternity too into Thy treasury; I am all Thine; take me, and enable me to glorify Thee now, in all that I say, in all that I do, and with all that I have."

Tuesday, 11 February 2014

British Doctor Wants to Rescue ME Patient Held at Danish Hospital

A British doctor who specializes in the devastating disease myalgic encephalomyelitis (ME) has joined an international bid to free a young ME patient who was incarcerated in a Danish hospital a year ago. Dr. Nigel Speight wants to examine Karina Hansen, a sane but sick woman aged 25 who was forcibly removed from her home in Denmark on February 12 last year, and provide a second opinion as soon as her state-appointed guardian gives the go-ahead. If he gains access Dr. Speight believes he will be able to rescue the young woman from the hospital’s mental ward, where she is being held against her will and the will of her parents.

A group known as Justice for Karina Hansen (J4KH) has been petitioning for the young woman’s release from Hammel Neuro Center since May last year. Their most recent campaign was launched last Thursday, in the form of an open letter from her parents, Per and Ketty Hansen, to the man appointed by the Danish health authorities as Hansen’s guardian. In terms of the World Health Organization’s (WHO) A Declaration on the Promotion of Patients Rights in Europe (March 1994), that states patients “should have the possibility of obtaining a second opinion,” they have asked that Dr. Speight be allowed to see her and give a second opinion. The ME Association in Denmark has undertaken to pay his travel costs. J4KH reported on their Facebook page that the guardian had acknowledged receipt of the letter and undertaken to discuss the matter with “those in charge of her care.” The group has also launched a new petition that already has more than 1,665 supporters.

The bedridden Hansen was taken from her home in Holstebro County last February, by five policemen who forced their way into the house; they were accompanied by two doctors, two social workers and a locksmith. Hansen called for help, but none of the family members could get past the police. She also phoned her sister, Janni asking for help, saying she did not know where she was being taken. The following day she phoned her mother from her cell phone asking how she could “get out of here.” She said she could not “take this.” They later discovered that she made a total of 43 calls and sent seven text messages before her phone battery went flat. The last call was to the police. The Hansens have asked for transcripts of the calls, but have received nothing. They have asked that her phone be recharged, but she has to do it herself and cannot get out of bed.

The Hansens said they were not given any reasons for the action and received no official paperwork relating to it. All they found was a note on the floor with a telephone number and message to say they would be contacted daily by a doctor. This did not happen, and they have not been permitted to visit their daughter because they do not support her treatment. Her sister, Janni has seen her briefly and is very concerned about her condition. The Hansens have taken legal action, but the court system is slow and drawn out.

Treatment for a Functional Disorder

Several days after Hansen’s removal, her parents received a letter from Nils Baile Christensen, a psychiatrist who said he was in charge of the treatment she would be given. Christensen is from The Research Clinic for Functional Disorders and Psychosomatics in Aarhus that is headed by Prof. Per Fink. Fink is the man who in 2010 introduced a new medical definition known as “bodily distress syndrome” (BDS) that categorizes all the “functional” syndromes that have physical symptoms that cannot be “explained by well-recognized medical illness.” Typical symptoms include headache; back, muscle and joint pain; stomach problems; shortage of breath; and fatigue. Illnesses that are lumped together under BDS include fibromyalgia, irritable bowel syndrome, chronic fatigue syndrome (CFS) and ME.

In Denmark functional disorders are labeled “psychosomatic,” and this particular clinic treats patients with cognitive behavioral therapy (CBT), graded exercise therapy (GET), and anti-depressant drugs. It has been reported that the clinic does not have experience treating ME patients that are severely ill, and there is widespread concern because it is known that any form of physical exertion can harm ME patients.

“All the other symptoms can be made worse by physical exertion, and mental effort can make the physical fatigue worse.”Dr. Nigel Speight

Hansen has been sick since she was 16-years-old, and has been diagnosed with ME, an illness that the WHO has coded “neurological” since 1969. Over the years she has been hospitalized several times, undergoing treatments that did not help her condition, which had made her extremely light and sound sensitive. ME was confirmed the correct diagnosis by several doctors, at least one of whom expressly noted that she “had no depressive or psychotic tendencies.” By 2009 the young ME patient was completely bed-bound, in a great deal of pain, and constantly exhausted.

In 2012 Hansen’s general practitioner and another doctor visited her without an appointment, stating they had been told by the government’s Board of Health to “evaluate her mental state.” While they found she her to be “mentally competent,” they said she would have to see a psychiatrist. This is when her story first broke, Hansen choosing pictures that could be used for publicity. She also hired a lawyer and went through the legal procedure to give her parents power of attorney to make all decisions for her when she got too sick to be able to make her own decisions.

Even though Hansen’s health care category stated that she could opt to see any doctor she wishes to see, and that the Danish government cannot assign doctors to her, she was assigned a psychiatrist by the Board of Health. At that stage she had her own physician, a dietician, and a dedicated health care giver, and was living at home with her parents and family.

Even though Hansen has been diagnosed with ME on numerous occasions, the research clinic doctors have now changed the diagnosis to pervasive arousal withdrawal syndrome (PAWS). According to research published by the National Institutes of Health (NIH), PAWS (which was previously known as pervasive refusal syndrome) is a very rare “child psychiatric disorder” about which little is known or been written about. Symptoms include resisting help and withdrawing socially.

Dr. Nigel Speight

The British doctor Speight believes that the emphasis put on the efficacy of CBT has “most unfortunately” resulted in the disease being viewed from a psychiatric standpoint rather than as “a ‘genuine’ disease.” He is convinced that ME is “primarily an organic illness” with no psychological factors causing it. There may though be “secondary psychological consequences.” This is clearly a reason he wants to rescue the young Danish ME patient who has been held at the hospital in Hammel for a year.

Medical advisor to the British ME Association, and reputedly the most experienced and knowledgeable ME consultant pediatrician in the United Kingdom, Dr. Speight has played a major role in the rescue of many children with ME from “care proceedings” by social services. In a recent interview he said it was “a very painful area” and one of the most unpleasant things he has witnessed in his entire medical career. A lot of it comes from “a simple failure of doctors to protect patients by diagnosing them with ME/CFS“ which “leaves them at risk of being persecuted for alternative explanations.”

He said he had been involved in over 30 cases, all of which resulted in child protection proceedings. However, most had been averted by the “second opinion” process. He described cases that are very similar to Hansen’s, where children were removed from their homes. For instance, he described how a Scottish teenager who had been diagnosed with ME that became very severe, and how she was sent to a psychiatrist who diagnosed pervasive refusal syndrome. By the time he was called in to intervene she was in a psychiatric ward, curled up in a fetal position, being tube fed – and like Hansen, was highly sensitive to light and sound. The story ended happily with her being transferred to “a gentle nursing home” where she had a slow but steady recovery. However, “how you can change from having ME to having a purely psychiatric illness just because you have been handed from a pediatrician to a psychiatrist, I do not really understand,” he said.

“It is the medical profession’s duty to be able to make a confident, clear diagnosis of ME/CFS and if they do that, there should be protection. But many of the cases I have seen have not even been diagnosed.”Dr Nigel Speight

Currently involved with about three cases in Britain, this British doctor is the best hope Hansen’s parents have had in the past year. His willingness to help rescue the young ME patient being held in a mental ward at the Danish Hammel Neuro Center Hospital has resulted in excitement on the part of the J4KH group which is headed by people who themselves suffer from ME and CFS. All the family wants is their little girl back.

Monday, 3 February 2014

Invest in ME’s Submission to the APPG for ME on 3rd February 2014

Questions from Invest in ME to Mike Penning, Minister of State for Disabled People Mike Penning


It is clear from many of our supporters that GPs are often known to refuse referrals for their ME patients on the grounds that there is little point in doing so as they believe there are no treatments. 

This illustrates an ignorance of ME and of research into the disease (RCGP Chair Dr Clare Gerada stated at the IIMEC8 Invest in ME International ME Conference, in London in 2013, that GPs know little about ME).

This impacts the patient as well as compromises their entitlement to benefits.

Some of the clinics set up for ME and CFS specifically state:
Please note that we do not accept referrals where the sole purpose is for second opinion for pending benefits claims.” (- King’s College CFS Unit)

How are patients supposed to obtain medical evidence for their benefits applications if they are refused referrals and the few clinics set up to see these patients cannot provide appropriate support?

How are they supposed to get better if their personal physician is ignorant of the disease and refuses to facilitate the possibility of improved treatment?

This adds further stress for patients and their families and enforces again the view that ME patients are subject to systemic bias in the healthcare system and ignored by disabilities agencies.

Effectively ME patients are discriminated against.

The failure of government policy on ME for a generation means that few patients have decent healthcare or prognosis once they have the diagnosis of ME.

This makes the impact of ATOS and welfare reforms even harder than usual for ME patients as no one seems to take responsibility for this group of patients even though many acknowledge the shameful treatment these patients have received (in Norway the government officially apologised for their treatment of ME patients).

How is it possible then for Atos medical assessors to be able to give prognoses of ME patients' ability to return to work based on one interview and with no knowledge of the disease and no understanding of the effects of the disease and especially the consequences from post-exertional malaise?

 It is obvious from patient experiences that ATOS are acting purely to enforce DWP policy to deny benefits - seemingly influenced by the outdated establishment bias which has been allowed to be built up by vested interests.


The role of the ministry is to improve the health and safety system, simplifying the welfare system and making sure work pays. Helping people to find and stay in work.

It is plainly obvious that these objectives are completely failing in being materialised for ME patients.

We would respectfully suggest that the minister consider the following in relation to the ministry’s objectives -

·        The health and safety of patients has not been improved and continues to be so poor that severe deterioration and even deaths from ME are becoming more frequent.

·        The welfare system for ME patients is a scandal - with little understanding of the disease being exhibited by DWP, or their contracted third-party organisations such as ATOS, and not even healthcare practitioners.

·        Making sure work pays is a meaningless concept if people are denied any hope of development of treatments or cures for this disease due to lack of proper research being funded by those charged with that responsibility (such as the MRC).

The minister, we feel, should consider the deplorable state in which successive governments have left ME patients. 

An entire section of the population is discriminated against on a regular basis - something a Minister for Disability Issues really ought to consider a major priority.  

The Chairman and Board of Invest in ME