New Suspect In Gulf War Syndrome

By Dr. Douglas Fields, Posted: March 3, 2010 02:25 PM

Washington, D.C.-- On February 26, 2010, the Veterans Affairs Department announced that it will re-examine the disability claims of thousands of Persian Gulf War veterans still suffering from the mysterious Gulf War illnesses two decades after the war ended. At a meeting of the Federal Advisory Committee on Gulf War Veteran's Illnesses held yesterday in Washington, D.C., scientists from around the country presented their latest research to committee members searching for clues to this mysterious illness. Early in the meeting a new culprit emerged -- "the other brain" -- the non-electric portion of the brain composed of brain cells called glia.

"This is one of the best explanations I've heard," commented distinguished neuroscientist Floyd Bloom, after a presentation by Dr. Linda Watkins of the University of Colorado speaking about her latest research showing that glial cells, called microglia, are the unsuspected agents in chronic pain and drug addiction. Previously neurons were thought to be the sole cause of chronic pain and morphine tolerance. However, the new insight into how these "immune cells" of the brain aggravate neurons after an injury by releasing substances that produce excruciating pain, a parallel with Gulf War Syndrome became apparent.

Gulf War syndrome is characterized by a collection of unexplained symptoms, many of them neurological, including chronic pain, chronic fatigue, depression, sleep disturbances, memory loss, as well as gastrointestinal and lung problems. A number of causes have been suspected, including exposure to low-level neurotoxins, including sarin gas, drugs taken to protect soldiers from biological and chemical warfare agents, pesticides used to treat tents and soldier's uniforms stationed in the desert, depleted uranium from munitions, and the toxic mixture of fumes released for a year after the war ended from oil fields set ablaze by the retreating Iraq soldiers. The toxic fumes blotted out the sun at midday for miles.

Many people suffer chronic pain after an injury. Unlike normal pain, chronic pain does not end after the injury heals; in fact it often gets worse. The latest research shows that chronic pain results from an interaction between the immune system and the brain. When we are sick, substances are released by the body that tell the brain to initiate the familiar "sickness response," which we have all experienced, for example when we catch the flu. Profound fatigue, headache, sensitivity to light and sound, and painful joints and muscles, drive us to bed. This sickness response forces us to rest and give the body the opportunity to fight the invading germ. This sounds a lot like the symptoms of many Gulf War veterans.

What Dr. Watkins suspects, based on her research on microglia in chronic pain, is that an initial exposure to some toxin "primes" the microglia in the brain to make them hyper alert. Then when a second infection, injury, or toxin is experienced, the brain's immune cells over-react, releasing too much of the chemical signals that cause the "sickness response", and they do not stop releasing the substances after the body heals. In the case of Gulf War veterans, the "initial trigger" could have been a reaction to an immunization, stress, or exposure to low-level toxins. Later a second insult to the body unleashes a run-away illness. Research from several labs on microglia in chronic pain has identified many steps in this neuro-immune signaling process that become disrupted and researchers have found specific drugs to restore the normal function of these pain circuits, thus ending the chronic pain. Most of this work is in laboratory animals but clinical studies are now under way.

In my overview to the committee on the four major kinds of glial cells in "the other brain", several other ways in which glia could be involved in Gulf War illnesses were recognized. This includes the involvement of glial cells, called astrocytes, in processing toxins in the brain. Parkinson's disease, for example can be caused by astrocytes acting on a foreign substance (a recreational drug), and converting it into a toxin that kills the neurons that die in Parkinson's Disease. Astrocytes also release factors that protect neurons from damage caused by inflammation or oxidation, and they release growth factor proteins that stimulate the growth and repair of neurons.

The latest research on the myelin insulation on nerve fibers in the brain, which is essential for sending electrical signals, is revealing a previously unsuspected role of myelin in cognition and psychiatric illness. Myelin insulation is especially vulnerable to blast injuries and to autoimmune diseases in which the body's immune system attacks the myelin sheath. The myelin sheath is made by a type of glial cell, called an oligodendrocyte. Prevously this insulation was of interest in diseases such as multiple sclerosis, but because the insulation speeds the rate of electrical transmission through nerve fibers (axons), myelin is now understood to have an important role in cognitive function, psychological illness, and learning.

One of the reasons the Gulf War Syndrome may have been so difficult to understand is that glia--the other brain--has itself been such a mystery until recently.

Another £164,000 wasted on silly psycho therapy

2nd March 2010
Media Release

£164,000 awarded for new research into the treatment of a chronic childhood condition
A research study looking into interventions and treatment options for a chronic childhood condition has been awarded funding of £164,000 by the Linbury Trust and the Ashden Trust.

The funding has been awarded to a research team led by Dr Esther Crawley, Consultant Paediatrician at the Royal National Hospital for Rheumatic Diseases NHS Foundation Trust, also known as the Min, and Senior Lecturer at the University of Bristol.

Esther and her team will carry out a pilot project to investigate whether it is possible to look at two different approaches to the intervention and treatment of Chronic Fatigue Syndrome/ME (CFS/ME) in Children.

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The team will carry out a pilot project to investigate how to recruit to a randomised controlled trial looking at the Phil Parker Lightning Process® and specialist medical care.

XMRV, 'CFS' and M.E. part 2

Anonymous said:

"I am disappointed in Sarah Shenk. It is discouraging to read rubbish like this from a respected charity like Hummingbird Foundation. It appears Shenk has gone out of her way to remain UN-informed about the Nevada cohort and other patients in the WPI study. The effect of her prejudice against the study is to jeer and denigrate the patients themselves. Shenk is colluding in 'us and them' defamation typical of abusive people anywhere. This offensive essay is beneath the dignity of the respected Hummingbird Foundation and does tarnish their good name and reputation.

The Incline Village outbreak was an ME outbreak - even minimal knowledge of the controversial history and events of that period, and the CDC's mishandling of the outbreak, shows that doctors well-informed about ME, Dr. Hyde and colleagues, had diagnosed the patients as having ME - and walked out of the experts' meeting at the CDC in disgust at CDC manipulation of events and plans to derisively name the outbreak as 'CFS' instead of ME. The result of CDC manipulation was that no patients in the US and few in Canada have been diagnosed with ME since that time - North American doctors simply do no use that diagnosis, and instead follow the directives of the malicious CDC and diagnose ME patients with 'CFS'.

However, it slanders and betrays patients all over North America to pretend that very sick patients don't have ME just because their dianosis is called 'CFS' instead. It's not the patients' fault that the CDC travesty of misnaming this disease in North America has persisted for so long.

Moreover, the WPI study cohort included patients from many countries - when the study results were unblinded in December (see video of Mikovits lecture in January for her report of this data), Mikovits found that there were patients from all over North America as well as Australia, UK, Ireland, Germany and elsewhere in their published Science study. These were patients who had travelled across their country or across the world to see the handful of ME-CFS doctors in North America who are experts in this disease (the real disease, not the 'Oxford' definition travesty), and have been treating patients for years. Anyone claiming to represent a respected ME charity should have done their homework and known this.

Or does Shenk suppose that no ME patients exist in North America? Or that no patients have developed ME since the late 1980s when the CDC took it's fateful turn into 'CFS' politics? Does Shenk suppose ME exists only in Commonwealth countries that she and her mates approve of, those that still have doctors who use the ME diagnosis?

This essay is appalling. Shame on Shenk and the once-noble Hummingbird Foundation for releasing it."

XMRV, 'CFS' and M.E.

Copyright © Sarah Shenk Febraury 2010. From www.hfme.org

There has been much media publicity lately over a small research study that claims to have made a connection between “CFS,” or "ME/CFS", and a retrovirus. While many are touting this as a huge medical breakthrough, there is a large group of doctors, scientists, patients and advocates who look at this information with tempered enthusiasm.

Why? These people are well-versed on the topic, and realize that before moving forward with great jubilation, more information is required. We realize that this research in and of itself, means precious little, so we have not only adopted a more "wait and see" attitude, but are of the opinion that this research is most likely relatively unimportant in the scheme of things and would not place it anywhere near the top of the list in the arena of much needed new M.E. research. We also worry that this research, and the sensationalism with which it is being reported, will detract from the need for genuine M.E. research.

The following comments from M.E. researchers, patients and advocates may help you understand better the "wait and see" attitude these folks have, and why it is so appropriate.

Additionally, as you consider the following insightful comments, please keep in mind what the Whittemore Peterson Institute itself says about the blood samples used in their recent retrovirus study:

"Dr. Peterson has a repository of samples from the original out break in Incline Village, Nevada which also includes longitudinal samples taken from patients from the 1980's through 2005. None of these samples were used in the XMRV study."

Reference link: WPI website

Thus we actually have no way of knowing if any M.E. patients were involved in the study at all, and that makes the results suspect to those of us who do have M.E. Knowing what we know about the wastebasket label "CFS", it makes us feel that the results of this study may not ever come to have any real value at all for M.E. patients, nor for many of those given a ‘CFS’ misdiagnosis. Perhaps the following comments, taken from an informal group discussion, will shed some light on a few of the reasons we need to consider this research with a healthy dose of skepticism.

Doctors do not know how to treat pain

By Jane Dreaper
Health correspondent, BBC News, Monday, 1 March 2010

Chronic pain needs to be recognised as a disease in its own right, experts say.
The hospital doctors and academics argue this would lead to more momentum for official strategies and funding to help patients.

Nearly 8m people in the UK are suffering ongoing problems with pain.
But only 2% of them end up seeing specialists - and a quarter believe their doctors do not know how to treat their pain, research shows.

Prescriptions worth a total of £584m are written every year for painkillers.
And pain - including back problems - is the second most common reason cited by incapacity benefit claimants for not working.

Dr Beverly Collett, a consultant in pain medicine from University Hospitals of Leicester and chairman of the Chronic Pain Policy Coalition campaign group , said: "This problem has huge ramifications for society as a whole. Pain is difficult to treat.

"Many patients are seeking reasons for what is behind the pain - but in the vast majority of cases, you can't find one.

"We are trying to get it taken more seriously - and there's a push, particularly in Europe, to say it is a disease in its own right."

Researchers are examining the idea that changes in the spinal cord and brain have the effect of maintaining pain in sufferers, making it an ongoing problem that can lead to depression or anxiety.

Experts believe more training would help GPs in assessing the severity of patients' pain.

Non-medical interventions such as physiotherapy and encouraging patients to stay active can also play a role, with some work showing that distraction can help patients avoid feeling pain.

Professor Steve McMahon, from the Wolfson Centre of Age Related Diseases at King's College London, said the number of new drugs developed to treat pain in the past decade was "very small".

But he said there was interest in the latest trials of a drug called Tanezumab, which might help treat knee and hip pain resulting from osteoarthritis.
Another expert, Irene Tracey, Nuffield professor of anaesthetic science at Oxford University, said: "There is a cultural problem where it's thought that there is a benefit from suffering.

"We have to get over this. It's not acceptable for people to suffer significant pain in the 21st century."

Simon hints at who might be 'so vain' ...

Tim Jonze guardian.co.uk, Friday 26 February 2010

For decades it's been belted out in karaoke bars across the world, but nobody has ever been sure as to the subject behind Carly Simon's You're So Vain.

Certainly, the list of potential suspects was long, with Simon's ex-lovers including Mick Jagger, Cat Stevens and Warren Beatty. Now the 70s singer has given a pretty big hint as to who it might be on a new acoustic version of the song, which contains the memorable line, "You're so vain, you probably think this song is about you". She told Uncut magazine: "The answer is on the new version of You're So Vain. There's a little whisper – and it's the answer to the puzzle." The singer went on to confirm that the whispered name – which is recorded backwards for added confusion – is "David".

Admittedly, "David" only narrows things down so far and a frantic guessing game has broken out in the press. Commentators have suggested David Cassidy, David Crosby and David Bowie as potential suitors. All fit happily into the "David" category although, if we're being technical here, that means we can't yet rule out former England goalkeeper David Seaman, either.

A frantic guessing game has broken out. The Daily Mail claims to have solved the mystery by declaring that the song is about music mogul David Geffen. Rather than an ex-boyfriend, the Mail suggests Simon was in a rage at Geffen's decision to promote Joni Mitchell over her own work.

This latest revelation won't please Warren Beatty, who went along with the song's sentiments by thinking it was, well, about him. As Simon has said herself in the past: "[Warren] certainly thought it was about him. He called me and said: 'Thanks for the song.'"

Now the mystery is closer to being solved. But we still haven't quite arrived at the point where the song's subject can turn around and say: "Well yeah, but it is about me!"

Never argue with a CBT idiot ...

__________________
Never argue with a CBT idiot, they'll drag you down to their level and beat you with experience!

A dark side to your cellphone?

By Christopher Ketchum, Los Angeles Times, Opinion,
2/23/10

We love our digital gadgets -- "magic" devices that define cool and promise to remake our lives for the better. But there is growing evidence of a dark side to the techno-magic. Your cellphone, and any other wireless device that depends on electromagnetic (EM) microwave radiation to function, may be hazardous to your health.

Most of the bad news comes from major labs and research institutions in Europe . What they're reporting is that using cellphones and Wi-Fi transmitters -- which operate using similar frequencies -- can have biological effects on the brain and body.

The scientific debate remains heated and far from resolved, as the Health section in The Times reported last week. But the research to date suggests a number of chilling possibilities as to what EM radiation may be doing to us.

For example, in 2008, neuroscientists at Swinburne University of Technology in Australia strapped Nokia phones to subjects' heads, then turned the phones on and off. On -- the brain's alpha waves spiked. Off -- the brain settled. The researchers speculated that the effect was the result of the brain "concentrating to overcome the electrical interference in brain circuits caused by the pulsed microwave radiation."

Swedish neuro-oncologist Leif Salford, chairman of the department of neurosurgery at Lund University, has found that cellphone radiation kills brain cells in rats, especially those cells associated with memory and learning. The damage occurred after an exposure of just two hours. In duplicating earlier research, Salford also found that cellphone microwaves produce holes in the barrier between the circulatory system and the brain in rats. One potential outcome, according to Salford , is dementia.

Meanwhile, Austrian researchers reported in 2004 that cellphone radiation can induce double-strand breaks in DNA , one of the undisputed causes of cancer.

So why isn't this a bigger issue in the U.S. ? Partly because there are countervailing studies and other scientists telling us not to be worried, that the risks are low or that we just don't know enough to say that the risks are real.

Consider the biggest study being done on the question of whether cellphones cause cancers of the brain, mouth and ear -- the 13-country Interphone study conducted under the auspices of the International Agency for Research on Cancer in France. The study's epidemiologists have looked at cancer patients and worked backward to establish cellphone habits.

The study, alas, has been fraught with controversy. The multinational researchers -- U.S. scientists conspicuously not among them -- have fallen into warring camps, and the full study has not been released.

However, pieces of the study have been made public. One Interphone study, for example, found that after a decade of cellphone use, the chance of getting a brain tumor goes up as much as 40% for adults. Another Interphone study reported a nearly 300% increased risk of acoustic neuroma, a tumor of the acoustic nerve. But still other Interphone researchers say their data show no increase in brain tumors -- or any tumor -- caused by cellphone use.

The cellphone industry lobby, CTIA -- the Wireless Assn., recently said in a statement that "peer-reviewed scientific evidence has overwhelmingly indicated that wireless devices do not pose a public health risk." Meanwhile, watchdog groups keep it vague. "The available science," says the Food and Drug Administration, "does not allow us to conclude that mobile phones are absolutely safe, or that they are unsafe."

So whom to believe, and what to do?

First, consider research done by Henry Lai, a biologist at the University of Washington : Only 25% of studies funded by the wireless industry show some type of biological effect from microwave radiation. Independently funded studies, however, are far more damning: 75% of those studies -- free of industry influence -- show a bioeffect. Some 30% of funding for the Interphone research was provided by industry, which critics say has resulted in a favorable skewing of some Interphone data.

Obviously, we need to demand more independent research into microwave radiation. In the meantime, we should also treat cellphones and other wireless gadgets with less adoration and more suspicion, and as individuals we may want to follow the lead of many nations and regulate the way we use them for ourselves.

For example, Belgium , France , Finland , Germany , Russia and Israel have publicly discouraged use of cellphones by children. (Independent research in Sweden last year concluded there was an astonishing 420% increased chance of getting brain cancer for cellphone users who were teenagers or younger when they first started using their phones.) France has gone so far as to issue a generalized national cellphone health warning, banned cellphones in elementary schools and considered outlawing marketing the phones to children.

The personal equivalent? For starters, don't get rid of your land line. Buy a hands-free device; keep your cellphone away from your head, face and neck. Don't carry it in your pocket for hours on end(there's some evidence cellphones aren't good for your sperm count).

Salford , the neuro-oncologist, has called the unregulated use of cellphones by 4.5 billion people worldwide "the largest human biological experiment ever." It's only common sense to do what you can to take yourself out of the guinea pig pool.

Christopher Ketcham is the author of "Warning: Your Cell Phone May Be Hazardous to Your Health" in February's GQ.

Professor Hooper's letter to NICE

From Malcolm Hooper Ph.D.,B.Pharm.,C.Chem.,MRIC
Emeritus Professor of Medicinal Chemistry
19 February 2010

Dear Sir Michael,

I am a ‘blast from your past’. I was at Sunderland School of Pharmacy and you were at Newcastle in Clinical Pharmacology when the M.Pharm course in Pharmacokinetics was developed. Congratulations on your eminent status and knighthood.

Since 1997, when I retired as Professor of Medicinal Chemistry, I have been involved with the emerging and widespread complex chronic multi-system illnesses (Gulf War Syndrome/Illness, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, ME/CFS, multiple chemical sensitivity, MCS, Aerotoxic Syndrome, organophosphate and other pesticide poisonings) that are of growing concern and are medically challenging -- writing and lecturing, locally, nationally and internationally.

This letter is linked to my concerns about ME which involves some 240,000 people in the UK with varying degrees of disability. Some 25% are housebound or bed bound and have formed their own group, www.25megroup.org/ .

The 442 page report “Magical Medicine, how to make a disease disappear”, copy attached with the press release, together with a copy of my letter to the Minister, Lord Drayson, currently the Minister responsible for the MRC, brings together an extensive and fully referenced review of the literature on ME.

It provides the evidence supporting my complaint about the MRC PACE Trial to Lord Drayson.

The entire report, the press release and the letter of complaint have now been circulated worldwide on the internet and have received much acclaim and support from the major ME organisations in various countries and numerous individuals, as well as academic institutions. The report is to be discussed by the International Association of CFS/ME at its next board meeting in early March, as confirmed by the President, Professor Fred Friedberg from the US.

Despite the vast amount of biomedical literature (some 5000 papers) going back to 1934 and the classification of ME as a neurological illness by the WHO (ICD-10 G93.3) since 1969, the official UK attitudes as demonstrated by the MRC, DWP, Department of Health, and to some extent your own organisation NICE:

a. ignore all this evidence
b. show an ideological commitment to a psychosomatic/behavioural model of the illness which is no longer tenable
c. recommend only cognitive restructuring techniques (CBT and GET) that are “not remotely curative” and have been shown to be of no lasting value and in the case of GET to be positively harmful (Peter White’s assertion that this is because the interventions have been incorrectly administered has been shown to lack credibility)
d. proscribe any investigative tests to identify the disorder, leading to missed diagnoses and misdiagnosis
e. support cruel, even vicious, actions that lead to patients being wrongly sectioned and parents, particularly mothers, accused of Munchausens’-Syndrome-by-Proxy, MSBP.
f. the result is that essential benefits and insurance payments to support patients and their families have not been paid or have been granted only after protracted and expensive legal action. All this adds to the burden of the illness for patients and for those who care for them.

The psychiatrists’ argument that what they refer to as “CFS/ME” is substantially different from past epidemics of ME does not withstand scrutiny in the light of current knowledge. It is beyond question that ME is associated with a severely disrupted immune system which renders patients more susceptible to both further viral and chemical challenge and reactivation of latent viruses and persistent viral-specific symptoms.

For the psychiatrists to amalgamate 25 different disorders (Holgate, RSM July 2009) and to focus on “medically unexplained fatigue” whilst ignoring cardinal symptoms of ME is a travesty of medical science.

Of special concern and relevance are the legal and ethical requirements facing doctors today, in particular, the legal requirement for doctors to keep up to date with developments in medicine and medical science (as clearly set out in “Good Medical Practice: Duties of a doctor. The duties of a doctor registered with the General Medical Council: 'Keep your professional knowledge and skills up to date' and 'Never abuse your patients' trust in you or the public's trust in the profession' (http://www.gmc-uk.org/guidance/good_medical_practice/duties_of_a_doctor.asp).

Ignoring vast swathes of evidence is not keeping up to date. For any registered medical practitioner – consultant or GP -- to dismiss or ignore this widely available evidence which invalidates the behavioural model of “CFS/ME”, together with the prescription of inappropriate interventions, is in clear breach of the GMC regulations and consequently raises issues of medical indemnity.

As noted in the report: “since the general body of knowledge known about by other clinicians and researchers working in the field of ME/CFS is now so great, the question repeatedly asked is: at what point will that body of scientific knowledge be so great that it will be considered serious professional misconduct to ignore it and to continue to deceive patients by pretending that it does not exist?”.

The recommendation not to carry out appropriate investigative tests is inconsistent with the Hippocratic Oath in its ancient or modern form.

The offering of treatment that is known even by its proponents to be ineffective is a betrayal of doctors’ responsibility to their patients. Merely to pronounce that the onus is on the individual doctor, when adherence to NICE Guidelines is to become compulsory, is unacceptable.

Inappropriate sectioning of patients and false diagnoses such as MSBP represents a further betrayal.

To rely on only a few studies, showing very modest efficacy, all of which having been shown to have very serious flaws (as is the case with the PACE Trial) and enshrine this inadequate information in official directions, publications and statements from authorised bodies, including NICE, is utterly unacceptable and dishonours the name of medicine as well as being destructive of lives of sick people and those who care for them.

I draw to your attention the commissioned editorial in last week’s BMJ by Alistair Santhouse, who you will be aware was a member of the CG53 GDG. Please read the attached eBMJ response submitted by Horace Reid, a former long-serving NHS clinician.

It was rejected for publication, a fact that is revealing in itself, given that it is impeccably accurate.

I would ask you in your role as Chairman of NICE to engage fully with our report and act accordingly to right the long standing wrongs that people with ME have suffered for the last 20 years.

With best wishes

Psychiatric stranglehold at the expense of patients

The BMJ have not published Invest in ME's response, so here It is.

"It is easy to see how the "strange conflation" to which Professor Broome refers would, of course, create a sense of unease in psychiatrists such as himself and his more prominent peers. Chronic fatigue may not be a terminal illness but myalgic encephalomyelitis can be.

The media generally do not portray the condition as a "progressive, paralysing, and commonly fatal illness". Normally the media follow the propaganda which elements in King’s College have continuously promoted since the late eighties.

If people with ME had only "bed sores, chest infection and malnourishment" to contend with then the rest of the patient population would not have to endure the consequences of the stranglehold which psychiatrists have on this illness – which is at the expense of patients and despite more and more evidence showing ME to be a serious and progressive biological condition.

Any pessimism exhibited by those with this illness finds its source not in the condition itself but in the ignorance and mendacity of those who engineer scarce funding from the MRC in order to support the pretence that ME is a somatoform condition, or who publish research based on flawed diagnostic criteria.

In fact those suffering the tremendous disability of severe ME are surprisingly optimistic despite the travails of having to deal with prejudice from the some parts of the medical profession and the media.

To use NICE as an example for promoting the use of CBT and GET is risible and perverse, yet entirely predictable. The fact that 90% percent of ME support groups opposed NICE, the fact that ME patients took NICE to a judicial review in protest at their guidelines for ME, the fact that the only support that NICE could muster from those supposedly supporting the ME community were from organisations that accept government money and who themselves organise “psychosocial conferences” on ME – all of this illustrates the lack of confidence which people with ME and their families have for NICE.

And yet NICE is supposedly there to guarantee excellence in clinical practices.

But we have long since gone past the point where a small section of psychiatrists influencing NICE can really persuade anyone that CBT and GET are serious answers to a neurological illness – we just have to wait for the psychiatrists to catch up or, more likely, be left by the wayside as real science establishes beyond doubt the pathology of this illness.

Patients and their families are increasingly aware of this policy-based evidence making which NICE and those who dominate the MRC promote based on the policies of the last generation which funds only research projects on ME which promote the psychosocial view of its aetiology.

The problem with the treatment of ME in the UK is essentially, as Professor Broome’s posting demonstrates, down to poor education about the condition and this stems from the education of medical students and continues, for many doctors, through their years of practice. It is also heavily influenced by biased research

If one is fed a constant diet of biased research then one can expect little more than ignorance to exist.

But there is hope as biomedical research into ME is on display at the annual Invest in ME biomedical research conferences which take place in Westminster in May – with its theme of Education of Healthcare Staff. Dr Broome could attend this conference on 24th May and clearly see how privately-funded biomedical research is progressing and showing the effects of ME – from cardiomyopathy to viral persistence and, from the latest research by the Whittemore-Peterson Institute, to the discovery of a link between the XMRV retrovirus and ME. Hardly just bed sores and chest pains!

There really is a great deal of catching up to do for some sections of the medical profession with regard to ME.

With one of the lead researchers on XMRV in attendance at this year’s conference perhaps the editor of the BMJ could also attend the conference and write an informative, unbiased article about it for the readers of this journal. The invitation is there.

Ultimately, education really is a progressive discovery of one’s own ignorance."

Invest In ME

Registered charity number 1114035

Support ME awareness - www.investinme.org

Reasons for Patient Disenchantment

EDITORIALS:
Alastair M Santhouse, Matthew Hotopf, and Anthony S David
Chronic fatigue syndrome
BMJ 2010; 340: c738

Horace A Reid,
Ill-Health Retired
Co. Down

Santhouse et al. congratulate themselves that research done by their colleagues at King’s College has underpinned the principal recommendations in NICE Guideline CG53.[1] As he has stated, Santhouse was himself a member of that Guideline Development Group.

In fact the NICE GDG was frequently at odds with senior staff at King’s CFS Research and Treatment Unit. In 2007 NICE concluded that “Currently, the aetiology of CFS/ME remains unknown”; (Guideline CG53 p 69). But Professor Trudie Chalder, head of the King’s team of which Santhouse[2] is part, disagrees. She has stated unequivocally that CFS is a “classical psychosomatic disorder.”[3] Chalder is a registered nurse, specialising in CBT. In 2006 NICE emphatically refused to endorse any of the myriad theories that CFS/ME is a psychiatric entity.[4] But Professor Simon Wessely, Santhouse’s colleague at the King’s CFS unit, has long suggested the contrary. By resort to means of continual repetition, Wessely’s “functional somatic” hypothesis [5] has in many quarters acquired the status of scientific fact.

NICE was not persuaded by lengthy submissions from King’s [6] that depression is a predisposing factor for CFS/ME. The GDG dismissed this claim in two curt sentences; (CG53 p 155). But in this present BMJ editorial, Santhouse et al. try to resurrect their self-serving theory that CFS and depression are integral.[7] In a press release in 2008, Professor Chalder claimed a 25% complete cure rate for CFS patients at the unit where she and Santhouse work.[8] In 2006 and 2007 NICE carefully distanced itself from such optimistic promises. The GDG said rates of full recovery are actually as low as 5-10%, [CG53 p 71] and warned that raising false hopes among patients would lead to disappointment.[9]

In 2006 Chalder and others claimed that “Cognitive behavioural therapy and graded exercise therapy have been shown to be effective in restoring the ability to work in those who are currently absent from work.”[10] In 2007 NICE demurred: “There is a lack of studies in this area … More information is needed on functional outcomes such as return to work or education.” (CG53 p 61)

Santhouse et al. describe CBT and GET as “treatments” for CFS/ME. As defined by NICE they are much less than that. They are merely techniques to help patients cope with an intractable and so far untreatable condition. In the words of NICE: “The GDG did not regard CBT or other behavioural therapies as curative or directed at the underlying disease process, which remains unknown. Rather, such interventions can help some patients cope with the condition"; (CG53 p 252).

The authors seem to suggest that evidence for the efficacy of CBT/GET is “robust” for most of the patient spectrum. But Santhouse knows very well it is not robust. In a 2009 commentary on a Cochrane Review, he conceded that with only 40% of CFS patients benefiting from CBT/GET, the cumulative results “are more modest than its proponents would recognize.”[11] More damningly, he acknowledged the Cochrane finding[12] that the known and frequent adverse events associated with the GET/CBT combination, have never been scientifically evaluated. As Santhouse put it, “researchers have never really looked.”[11]

Santhouse et al. record that “often” there is “breakdown of trust between doctors and the patients and their families”. This is a shameful situation, but it was predictable. And eleven years ago it was predicted, by a leading American CFS researcher.[13] His warning came in response to Professor Wessely’s “functional somatic” hypothesis, then first published.[5]

The unattractive treatment philosophy currently obtaining at King’s deviates significantly from NICE guidance. Nevertheless it has been assiduously propagated, and has now been embraced across many parts of the UK. It is ironic that a number of valuable NICE recommendations remain unimplemented, while psychogenic theories proliferate. Nor is that any coincidence. It is easier, and cheaper, for doctors and social services to ignore and stigmatise severely-affected housebound patients like Lynn Gilderdale, than to provide the comprehensive range of home support services that NICE recommended. Such is the pervasive unwelcoming atmosphere in much of the NHS, that many thousands of ME patients have disconnected altogether from conventional medical care. Their fears of iatrogenic harm are well justified, given the hazardous, poorly-tested and unproven nature of the only “treatments” on offer.

Comments in reference to Professor Wessely made by Professor Jason in 1999 could equally provide enlightenment for Santhouse et al. in 2010: “Biases toward psychiatric explanations for these syndromes have been filtered to the media … Perhaps the dissatisfaction with medical care that the authors cite as a common theme among patients with these syndromes, is the stigma they endure due to the trivialization ...”[13]

Horace Reid.

References:

[1] Turnbull N, Shaw EJ, Baker R, Dunsdon S, Costin N, Britton G, Kuntze S and Norman R (2007). Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management of chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy) in adults and children. London: Royal College of General Practitioners.

[2] Who’s Who, Staff in the Chronic Fatigue Syndrome Research and Treatment Unit, King’s College, 2010.

[3] Advertisement (ref. 07/R68) for a research worker, Institute for Psychiatry at the Maudsley, placed by Professors Ulrike Schmidt and Trudie Chalder, July 2007.

[4] “Specifically, the GDG does not state that ME/CFS is a behavioural disorder, a psychiatric illness, a somatic/functional disorder, an illness belief, depression or anxiety disorder”. GDG response to Stakeholders’ Comments 2006: Chapter 5 p 45.

[5] Prof S Wessely, C Nimnuan, Dr M Sharpe. Functional somatic syndromes: one or many? The Lancet, Volume 354, Issue 9182, Pages 936 - 939, 11 September 1999,

[6] GDG response to Stakeholders’ Comments 2006; Chapter 1 pp 71-8.

[7] Santhouse AM, Hotopf M, David AS. Chronic Fatigue Syndrome. BMJ 2010;340:c738

[8] Press release, 12/5/2008, South London & Maudsley NHS: “Telephone Treatments for People With ME”.

[9] GDG response to Stakeholders’ Comments 2006; Chapter 6 p 308.

[10] Occupational Aspects of the Management of Chronic Fatigue Syndrome: a National Guideline, NHS Plus, 2006.

[11] Review: CBT reduces fatigue in adults with chronic fatigue syndrome but effects at follow-up unclear, Alastair M Santhouse (commentator), Evid. Based Ment. Health 2009; 12: 16.

[12] Price JR, Mitchell E, Tidy E, Hunot V. Cognitive behaviour therapy for chronic fatigue syndrome in adults. Cochrane Database of Systematic Reviews 2008; Issue 2. Art No.: CD001027.

[13] Leonard A. Jason, Renee R. Taylor, Sharon Song, Cara Kennedy, Danielle Johnson, Dangers in Collapsing Disparate Syndromes, Lancet, Correspondence, Volume 354, Number 9195, 11 December 1999.

Competing interests: Patient with ME/CFS

I adore CBT

BY: A.F. Andrew,
Family physician
Perth, Australia

In the wake of Lynn Gilderdale’s death, one would have expected an editorial in the BMJ to acknowledge the devastating effects of severe ME, and try to lead the way forward to find proper treatment and hopefully a cure.

One would have expected that such an editorial would mention the fact that ME has been classified by the WHO as a neurological illness since 1969. A fact that most doctors, including myself before I fell ill, are not aware of.

Most doctors are led to believe, by a small group of psychiatrists, that this illness, either doesn't exist, or is based on false illness believes, and is all in the mind. That the psychiatrist changed the name 20 years ago from ME in CFS, and then changed the criteria, is just a small detail.

The basis of CBT for ME/CFS is fantastic. First, you blame the patient for his illness, and then when CBT doesn't cure him, you blame him for not being motivated. When I'm fit and well again, I will use this same principle when I see a patient with for example, a severe infection. If the antibiotic I have prescribed, doesn't solve the problem, then I will blame the patient. That the culture has shown that I prescribed the wrong treatment, is something I will ignore.

According to the three psychiatrists, CBT and GET are super treatments for ME. Lynn at one stage, couldn't swallow anymore, to brighten up her life even more. Her doctor then had the choice to treat swallowing problems, with the so fancied behavioural therapy, i.e. CBT, or with exercise therapy, also called GET, the other psychiatric favourite. Luckily, Lynn's treating doctor inserted a tube, so she could be tube fed. Although I agree with the psychiatrists that CBT is best.

You might still think that ME doesn't exist, or, that it is all in the mind, and continue to be incredibly hostile to your ME patients. However, you might be next and become an ME patient as well, just like myself and many others. And I can assure you, you will be in for a big shock, and at the same time, you will also find that this illness has got nothing to with what you have been reading in your magazines, written by CBT psychiatrists. So hip hip hooray for CBT, because who needs proper treatment for a severe and very disabling illness anyway?

Competing interests: I am a doctor with ME who simply adores CBT

CBT and GET: biopsychosocial nonsense

Catherine N Bartholomew,
Dismissed due to incapacity

"There are successful treatments available" states Matthew Broome.

Where? What are they? Why haven't I and others with ME been given access to these treatments?

I am attending an 8-session 'lifestyle management' programme – I can’t call this ‘treatment’ but it is all that is available to me. Challenging negative thoughts doesn’t actually cure anything. And telling someone to ‘relax more’ when they can barely do anything other than sit on the sofa all day would be laughable if it wasn’t my health they are playing with.

I am struggling to cope with my condition which has been getting steadily worse since my second URT infection nearly two years ago. From a dynamic, active person, optimistic about my future, I have become a shuffling recluse unable to keep myself, my clothes or my house clean. I live alone and cannot afford paid help as I lost my NHS job because of my ME.

Break a leg and you are treated with traction and a plaster cast. You will provoke commiseration and you can look forward to the leg healing.

A diagnosis of asthma will engender concern and will be met with sympathy and an inhaler.

Have the misfortune to develop ME and you find yourself without treatment, without answers, without understanding, without empathy, without a cure. For the record, ME is not a lifestyle choice or a psychiatric condition (check it out with the WHO)!

Pessimism? Pessimism is a by-product of the current system and the lack of support and lack of respect we face everyday.

Competing interests: None declared

CBT defined ...

CBT defined: "The price of freedom of religion, or of speech, or of the press, is that we must put up with a good deal of rubbish."
Robert Jackson

CBT and GET are ineffective and (potentially) harmful

Frank N.M. Twisk, Patient and literature researcher

CBT/GET is ineffective and potentially harmful.
ME/CFS patients seem to die considerably younger.
13 February 2010

As has been established by the Bagnall et al. (1) and the Price et al. (2), the solution proposed by Santhouse (3) cognitive behavioural therapy (CBT)/graded exercise therapy (GET) reduced "fatigue severity" in 40% of chronic fatigued people, in contrast with 26% in usual care.

Taking into consideration the placebo effect, the fact that a reduction in "fatigue" is not reflected by objective improvement (4, 5), the fact that the evidence base for CBT and GET is almost non-existent, etc. one must conclude that CBT and GET is not effective.

Moreover, as established by large patient surveys, e.g. (6, 7), and by clinical practice (5), CBT/GET has a negative effect on the symptomology of many ME/CFS patients (pain, muscle weakness, neurocognitive impairment etc.)

This can be explained by the fact that exertion, and thus GET, intensifies the pre-existing pathophysiology: inflammation, immune dysfunction, immunosuppression, (persistent) infections, oxidative and nitrosative stress and their sequels, e.g. mitochondrial damage/dysfunction and a disturbed circulation (8, 9).

All in all, CBT/GET is a non-evidenced based therapy and even potentially harmful for many ME/CFS patients (10).

Santhouse also asserts incorrectly that 'the greatest risk to life is likely to be suicide' and 'this is often linked to depression that can be effectively treated'.

A study into the causes of death by a Jason (11) established that ±20% of the patients had died from cancer, ±20% had died as the consequence of heart failure, and ±20% as a result of suicide.

The mean age of those who died from cancer and suicide was 47.8 and 39.3 years, respectively, which is ±24 years younger than those who died from cancer and suicide in the general population.

The pathological abnormalities established in ME/CFS repeatedly plausibly explain an increased risk for cancer (12)and heart failure (13).

Certainly it is warranted to treat depression in ME/CFS.
However, successfully treating depression, e.g. by antidepressants, has no effect on characteristic physical and cognitive ME/CVS symptoms (14, 15, 16).
In conclusion, the comments made by Santhouse do not seem to be very appropriate.

Ironically, the CBT/GET mantra by Santhouse and colleagues and denial of serious biological aberrations is exactly the reason why many patients feel that 'the medical profession has given up to them'.

It is about time the medical profession takes this devastating illness seriously by exploring the biological abnormalities in depth and developing effective therapies aimed at these aberrations.

So the death of Lynn Gilderdale and many others will not be in vain.

1.. Bagnall A, Hempel S, Chambers D, Orton V, Forbes C. The Treatment and Management of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis in Adults and Children. Centre for Reviews and Dissemination (CRD), University of York. 2007; CRD Report 35:161.
2. Price JR, Mitchell E, Tidy E, Hunot V. Cognitive behaviour therapy for chronic fatigue syndrome in adults. Cochrane Database Syst Rev. 2008 Jul 16;(3):CD001027.
3. Santhouse AM, Hotopf M, David AS. Chronic fatigue syndrome. BMJ. 11 February 2010. doi:10.1136/bmj.c738.
4. Wiborg JF, Knoop H, Stulemeijer M, Prins JB, Bleijenberg G. How does cognitive behaviour therapy reduce fatigue in patients with chronic fatigue syndrome? The role of physical activity. Psychol Med. 2010 Jan 5:1 -7.
5. Council of approval with regards to rehabilitation contracts with CFS reference [Akkoordraad in het kader van de revalidatieovereenkomsten inzake ten laste neming door Referentiecentra van patiënten lijdend aan het Chronisch vermoeidheidssyndroom] [Dutch]. Evaluation Report (2002- 2004) with respect to Rehabilitation Contracts between the RIZIV and the CFS Reference Centers [Evaluation Report 2002-2004 with respect to rehabilitation contracts between the RIZIV and the CFS Reference Centers] [Dutch). 2006, July.
6. Action for M.E./AfME. Scotland M.E./CFS Scoping Exercise Report. 2007.
7. Bjørkum T, Wang CE, Waterloo K. [Patients' experience with treatment of chronic fatigue syndrome] [Article in Norwegian]. Tidsskr Nor Laegeforen. 2009 Jun 11;129(12):1214-6.
8. Kerr JR, Petty R, Burke B, Gough J, Fear D, Sinclair LI, Mattey DL, Richards SC, Montgomery J, Baldwin DA, et al. Gene expression subtypes in patients with chronic fatigue syndrome/myalgic encephalomyelitis. J Infect Dis. 2008 Apr 15;197(8):1171-1184.
9. Gow JW, Hagan S, Herzyk P, Cannon C, Behan PO, Chaudhuri A. A gene signature for post-infectious chronic fatigue syndrome. BMC Medical Genomics 2009, 2:38. doi:10.1186/1755-8794-2-38.
10. Twisk FNM, Maes M. A review on cognitive behavorial therapy (CBT) and graded exercise therapy (GET) in myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS): CBT/GET is not only ineffective and not evidence-based, but also potentially harmful for many patients with ME/CFS. Neuro Endocrinol Lett. 2009 Aug 26;30(3):284-299.
11. Jason LA, Corradi K, Gress S, Williams S, Torres-Harding S (2006). Causes of death among patients with chronic fatigue syndrome. Health care for women international. 2006; 27 (7): 615–26. doi:10.1080/07399330600803766.
12. Meeus M, Mistiaen W, Lambrecht L, Nijs J. Immunological similarities between cancer and chronic fatigue syndrome: the common link to fatigue? Anticancer Res. 2009 Nov;29(11):4717-26.
13. Maes M, Twisk FNM. Why myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) may kill you: disorders in the inflammatory and oxidative and nitrosative stress (IO&NS) pathways may explain cardiovascular disorders in ME/CFS. Neuro Endocrinol Lett. 2009;30(6):677- 93.
14. Vercoulen JH, Swanink CM, Zitman FG, Vreden SG, Hoofs MP, Fennis JF, Galama JM, van der Meer JW, Bleijenberg G. Randomised, double-blind, placebo-controlled study of fluoxetine in chronic fatigue syndrome. Lancet. 1996 Mar 30;347(9005):858-61.
15. White PD, Cleary KJ. An open study of the efficacy and adverse effects of moclobemide in patients with the chronic fatigue syndrome. Int Clin Psychopharmacol. 1997 Jan;12(1):47-52.
16. Wearden AJ, Morriss RK, Mullis R, Strickland PL, Pearson DJ, Appleby L, Campbell IT, Morris JA. Randomised, double-blind, placebo- controlled treatment trial of fluoxetine and graded exercise for chronic fatigue syndrome. Br J Psychiatry. 1998 Jun;172:485-90.

Competing interests: None declared