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‘Trial By Error’ – by David Tuller.

‘Voices from the Shadows’ shows the devastating effects some patients have suffered following exercise programmes. These treatments of Graded Exercise Therapy and Cognitive Behavioural Therapy, used as the primary treatment for CFS and ME on the basis that patients have become de-conditioned from resting too much, caught in a cycle of boom and bust as a consequence of mistaken ideas about this illness, have become the accepted treatment across the NHS for patients.

David Tuller is  academic coordinator of the concurrent masters degree program in public health and journalism at the University of California, Berkeley. He has spent the last year or more pursuing an in-depth investigation into a major research project – the UK’s PACE Trial –  which received what was a disproportionate amount of money from the MRC in comparison with other research projects for CFS in the UK. The distorted publicity give to the trials results, which misrepresented the illness, impacted very badly on public and health professionals perceptions of patients.

David Tuller’s investigation, ‘Trial By Error’ was published n three instalments on October 21st, 22nd and 23rd 2015 in Virology with links to each instalment at

He says “Top researchers who have reviewed the study say it is fraught with indefensible methodological problems.” and includes quotes by a number of highly respected scientists –

Dr. Bruce Levin, Columbia University: “To let participants know that interventions have been selected by a government committee ‘based on the best available evidence’ strikes me as the height of clinical trial amateurism.”

Dr. Ronald Davis, Stanford University: “I’m shocked that the Lancet published it…The PACE study has so many flaws and there are so many questions you’d want to ask about it that I don’t understand how it got through any kind of peer review.”

Dr. Arthur Reingold, University of California, Berkeley: “Under the circumstances, an independent review of the trial conducted by experts not involved in the design or conduct of the study would seem to be very much in order.”

Dr. Jonathan Edwards, University College London: “It’s a mass of un-interpretability to me…All the issues with the trial are extremely worrying, making interpretation of the clinical significance of the findings more or less impossible.”

Dr. Leonard Jason, DePaul University: “The PACE authors should have reduced the kind of blatant methodological lapses that can impugn the credibility of the research, such as having overlapping recovery and entry/disability criteria.”

New research shows “unequivocal evidence of immunological dysfunction in ME/CFS”

Columbia University, Center for Infection and Immunity, has news of exciting  new research, on their website on Feb 27th 2015

“Researchers at the Centre for Infection and Immunity at Columbia University’s Mailman School of Public Health identified distinct immune changes in patients diagnosed with chronic fatigue syndrome, known medically as myalgic encephalomyelitis (ME/CFS) or systemic exertion intolerance disease.”  The research is published in the new American Association for the Advancement of Science journal, Science Advances

“This study delivers what has eluded us for so long: unequivocal evidence of immunological dysfunction in ME/CFS and diagnostic biomarkers for disease,” says senior author W. Ian Lipkin, MD, also the John Snow Professor of Epidemiology at Columbia’s Mailman School. “The question we are trying to address in a parallel microbiome project is what triggers this dysfunction.”

This is an unusually large and rigorous study with 298 patients and 348 healthy controls.

“The study supports the idea that ME/CFS may reflect an infectious “hit-and-run” event. Patients often report getting sick, sometimes from something as common as infectious mononucleosis (Epstein-Barr virus), and never fully recover. The new research suggests that these infections throw a wrench in the immune system’s ability to quiet itself after the acute infection, to return to a homeostatic balance; the immune response becomes like a car stuck in high gear. “It appears that ME/CFS patients are flush with cytokines until around the three-year mark, at which point the immune system shows evidence of exhaustion and cytokine levels drop,” says Dr. Hornig.

“..the researchers used immunoassay testing methods to determine the levels of 51 immune biomarkers in blood plasma samples..  They found specific patterns in patients who had the disease three years or less that were not present in controls or in patients who had the disease for more than three years. Short duration patients had increased amounts of many different types of immune molecules called cytokines. The association was unusually strong with a cytokine called interferon gamma that has been linked to the fatigue that follows many viral infections, including Epstein-Barr virus (the cause of infectious mononucleosis). Cytokine levels were not explained by symptom severity.”

The lead researcher Mady Hornig is quoted as saying “Our results should accelerate the process of establishing the diagnosis after individuals first fall ill as well as discovery of new treatment strategies focusing on these early blood markers.”

Articles on this cytokine study appeared immediately in the Wall Street Journal and the NY Times, written by Amy Marcus and by David Tuller.


10th Invest in ME Research International Conference – London 29th May 2015

Information about this years 10th Invest in ME Research Conference  can be found at

Speakers will include:

Prof Ian Charles,

Dr Amolak Bansal,

Prof Sonya Marshall-Gradisnik / Dr Don Staines,

Dr Jo Cambridge,

Prof Mady Hornig,

Prof Jonas Bergquist,

Dr Claire Hutchinson,

Dr John Chia,

Dr Oystein Fuge / Prof Olav Mella.

Where can desperate ME patients turn for help?

When ME patients fall foul of the NICE & NHS confusion about the classification of their illness, who can they turn to for help? Who will advocate for those in dire need – when they are  told that their ME is a functional or a psychiatric illness and they are threatened or forced into treatments that harm them, or they are accused of being malingerers?

When your future health and even your life, is at risk because of the severe deterioration and post exertional amplification of symptoms – caused by mis-management and treatments involving aerobic exercise and overactivity, a harmful environment where you are overexposed to stimuli, or if your feeding and support is withdrawn – who can you turn to for help in the UK?

I didn’t realise until quite recently just how bad, how terrifying this can be, and just how little help there is for patients with severe ME – especially if someone is on their own and depending on social services for care.

As far as I can see, The 25% Group is the only adult charity in the UK with an advocate who could help in such circumstances. She is very good at her job, but desperately overworked and underfunded. She cannot take on all cases that need help, and members must be prioritised.   For children the TYMES Trust offers help to their members, as you can see from their reports of the horrifying number of families who have needed their help to stop their children being removed.

Why have we, as patients, carers and parents, not insisted to ME charities that adequate support for those patients whose lives are being put at risk is an urgent priority?

Yes, we need research to be funded – but high quality, well designed research looking at key biomedical issues. Too much research is actually a waste of money as far as patients are concerned – it is too small scale, too badly designed, sometimes totally irrelevant or even dangerous and too often includes patients who are misdiagnosed with ME/CFS and actually have other conditions. The big International players are now doing some of the research that needs doing, although in pitifully small amounts, and some smaller scale research projects are carefully directed and well thought out, but patients’ money is still going into random, badly designed, small scale projects whose aim is primarily to help promote particular researchers careers and job security, by bringing in funding for the researcher’s university, and to satisfy patient requests for research.

Surely it is time to make sure that some funding goes to help patients whose lives are being ruined. The sums needed to do this are minute in comparison with the costs of research. For example a research project by Clare McDermott to enable ME patients to share their experiences online, recently presented to to Forward ME and asking for support, has an estimated cost of £350,000!!

Research into the pathophysiology of ME and treatment options needs to be addressed as a priority, but in the meantime we can’t just abandon the unfortunate patients whose lives are being destroyed by medical ignorance, prejudice and psychiatric power struggles – while we support poor quality research, some of which is so distorted it can do more harm than good.

So, my personal suggestion is – join The 25% Group for the Severely Ill if you are mainly housebound, or join TYMES Trust if you have a child. It appears to be the severely ill who are most at risk. Very severely ill patient often develop problems with eating and absorbing food. This is being widely promoted as a psychological issue rather than a common aspect of very severe ME  (evidenced in Voice from the Shadows). You can help other severely ill patients by making a donation to the 25% Group, or fundraising for their advocacy service. Many charities depend entirely on donations and fundraising by patients and their families – make sure that your money is used in the way you want! Some charities have paid fundraisers to raise money and use it in the way their trustees want – but even then you may perhaps have an influence. Please make you voice heard.

None of us want to see children taken from their parents by social services, parents and patients put in psychiatric wards,  patients deprived of feeding to force them into hospital where their ME may be classified as being a ‘functional condition’ or somatoform disorder, or patients subjected to harmful management, or just abandoned. In these kinds of cases expert help is needed urgently, to try to prevent such things happening – and an effective and experienced ME advocate would be the best help to have available to help sort out the priorities of what to do next.

Who is going to put that safety net in place for all those who are vulnerable to bullying and abuse by professionals?

These are some of the issues that need to be urgently addressed in such cases – 

  1. When should you try to contact your MP to ask for help, how do you contact them and how do you educate them about ME?
  2. And your local Councillors? Could they be of help? and which ones? Should you try and contact those with most influence? and again, can anyone help you educate them too?
  3. Should you try to change your GP? Have you already tried everything you can to help your GP understand about severe ME.
  4. Is there misleading or inaccurate information in  your medical records which has lead to this situation? How do you access these and get incorrect or misleading material changed?
  5. How do you find a good solicitor? Do you need legal aid? Are you eligible for legal aid? How do you find out? Are there any solicitors who already have experience of supporting patients with ME. And what should they specialise in – mental health? – social care? You’ll probably need to educate them about ME too!
  6. Are there any doctors or consultants who can ensure you have an accurate diagnosis ? Many people are not accurately diagnosed. Are you well enough to get to see a consultant or do you have to find someone who is willing to visit you? Are there any specialists who would be willing to make a home visit?
  7. Is your diagnosis of ME reliable, but your ME is considered to be a form of psychiatric illness i.e. perhaps one of the  somatic symptom disorders (a new very broad-ranging category which includes what was previously named somatoform disorders) somatisation disorder, psychosomatic illness, MUPS or MUS (physically unexplained physical symptoms),  malingering,  factitious disorder (Munchausen’s Syndrome), or conversion disorder,  or is your ME being considered to be a functional neurological disorder? There are many possible mental health misdiagnoses that people ill with ME might be given. (A recent article in the Independent  has an interview with the President of the Royal College of Psychiatrists who gives CFS (ME) as an example of the stigma attached to mental illness! So CFS or ME  is very publicly categorised by a top psychiatrist as being a mental health illness.) The main medical text book by Kumar and Clark doesn’t mention ME, but includes CFS in the mental health section under Functional or Psychosomatic Disorders, so having your CFS/ME treated as a mental health condition is a very real risk, especially for those who are severely ill and who develop problems with eating and digesting food.
  8. How do you deal with Social Services and help them to understand the illness? Do you also need to re-educate any Care Company involved?
  9. Will showing the ‘Voices from the Shadows’ film to the professionals involved help? – It has often helped people understand more about severe ME.
  10. What other information should you give to people to help them understand your illness? How can you access it? Would the ME Association Purple Booklet be useful? or other material accessed via this website here. What would be most useful?
  11. Are there other advocates who could help? (especially if you have other diagnoses too – there may be other charities  – i.e. -for Hyperflexibility  – EDS –  POTS or Crohns, if you have these co-morbidities, who might help)
  12. If there are no charity advocates who can help you then should you contact an independent advocacy service? – to ask for someone to write letters on your behalf if  you can’t do it yourself.
  13. If you can’t do all these things yourself, or your carer can’t do it for you and you have absolutely no one to turn to, which charities might help you as a last resort?  Who can you trust to try to keep you safe – without risking ending up in an even worse situation – because that too is possible!


The current NICE and NHS confusion about the classification of  ME and CFS.

Prof Baker from NICE agreed, at a Forward ME meeting in June 2014, that the NICE Guideline for CFS/ME needs replacing – but that he can’t do anything about that!

Next, following a request from Jane Colby, pointing out that the NICE Guideline for CFS/ME couldn’t be listed under two different classifications, it was removed from the mental health listing – at long last! However, not only was it removed from the Mental Health listing, but it was also removed from Neurological conditions!!!! One step forward and another step backwards!

Earlier this year Prof Hooper wrote; “the WHO publicly confirmed that: “Fibromyalgia, ME/CFS are not included as Mental & Behavioural Disorders in ICD-10, there is no proposal to do so for ICD-11” and that this has been accepted by the UK Parliamentary Under-Secretary of State for Health (Jane Ellison MP) who, on 25th February 2014 stated on the record: “The World Health Organisation is currently developing the 11th version of the International Classification of Diseases, which it aims to publish in 2017. No discussions have taken place between the Department and the WHO on the reclassification of ME/CFS, but the WHO has publicly stated that there is no proposal to reclassify ME/CFS in ICD-11”.

The Countess has followed this up with further questions on Nov 26th and 28th. She tabled a question asking the Government “which organisations within the National Health Service or which represent members who provide services to the National Health Service are bound by the World Health Organisation’s International Classification of Diseases?” The answer from Lord Howe, “The United Kingdom as a member state of the World Health Organization (WHO) is expected to comply with the WHO Nomenclature Regulations 1967 and is required to use the most current version of the International Classification of Diseases (ICD-10) for reporting cause of death and disease for compiling and publishing mortality and morbidity statistics. As such all providers of National Health Service funded care are required to submit ICD-10 codes for national reporting.”

Postviral fatigue syndrome and benign myalgic encephalomyelitis  are classified by the World Health Organisation ICD-10 G93.3 under ‘other disorders of the nervous system’ and then ‘other disorders of brain.’

A completely different illness – ‘fatigue syndrome’ – is included under ‘other neurotic disorders’ and ‘neurasthenia’ at  F48.0. This listing specifically excludes post viral fatigue syndrome (G93.3). Another diagnosis which is sometimes being mis-attributed to patients suffering from ME is ‘persistent somatoform pain disorder ‘ F54.4.


We live in Gothic times!

An excerpt from a keynote presentation by Dr Iain Biggs at the ”Locating the Gothic” International conference, Limerick, Ireland, Oct.2014. It can be read in its entirety at

“Before I describe my second edgeland I need to ask how you understand Angela Carter’s claim that: “we live in Gothic times”.

I ask this because my second edge-land is, at least to my mind, the product of a literal enactment of the Gothic. It’s a zone marked by the terror imposed by people in authority onto others already rendered helpless by chronic illness. This is the Gothic zone inhabited by people suffering with ME, and by their families and carers. A zone created by the medical and psychiatric Establishments that neglects and abuses them and that is contested by the same therapeutic impulse that I find in aspects of the Gothic.

I think the award-winning film Voices from the Shadows is animated by that same impulse. By the need to give a face to – and so to face – a situation that is almost unbelievably painful or terrifying. In the case of ME this is abuse – by authority figures whose actions exhibit the exact antithesis of the qualities they publicly claim to embody – of chronically sick individuals without power. In extreme cases these authority figures threaten patients with forcible hospitalisation or with being sectioned and placed in psychiatric units. They threaten this because patients, or their carers, refuse treatments that they know will exacerbate an already chronic illness. And of course individuals have died or taken their own lives when these threats are carried out.

The Gothic nature of the terror here lies in part in a grotesque but deeply institutionalised assumption. Namely that nothing ME sufferers say about their illness can be trusted. Their experience, self-understanding, their entire identity, is regularly dismissed out of hand by those professionally empowered to determine their treatment. Any articulation of their own reality that is at odds with the official view of their illness is, all too often, taken as evidence of a pathological desire to deceive, a wilful attempt to ‘stay sick’.

So I want to argue that ME sufferers live not only in Gothic times but also in a Gothic zone. They are trapped in this liminal zone and, as a consequence, constantly threatened with ‘zombification’ in the sense of being condemned to a kind of  living death. Threatened not simply by the chronic nature of the illness itself – as if that were not bad enough – but also by doctors, social services employees, psychologists, the realpolitik of academic research, and the fiscal policies of politicians. ME sufferers are subject to what is – paraphrasing Robert Miles on the Gothic – a process of violent deracination. They’re dispossessed in their identities, bodies and homes. Many are suspended, perhaps permanently, in a deeply frightening condition of violent personal and social rupture and dislocation – one that’s always, horribly, threatening to get worse.

My contention then is that ME sufferers – and of course innumerable others who suffer similar socially sanctioned abuse and neglect – literally live out, on a daily basis,the horror epitomised by a strand within the Gothic. This strand embodies an element of institutionalised sadism within our social system. Sadism animated by fear of cognitive dissonances that cannot be resolved or controlled by the professional authority of those who enact it. And behind this fear is the refusal to acknowledge a failure to progress, a failure to master disease. Ultimately this is a deeper fear – of regression, of the lifeworld as polyverse and, by implication, that Stengers’ divide is wrongly located, that the line between ‘progress’ and ‘regression’ has been wrongly drawn. So there’s a question here. Does all this need to be remapped, both in the context of polytheism as a distinct mode of thought and universal organisation, and of the presence of spectral and futural in the present as evoked by Derrida.

I want to suggest that paying closer attention to the two edgelands I’ve referred to might assist us to re-negotiate or translate across Stengers’ divide. It might strengthen our impulse to use image, the performative and text – both professionally and in day-to-day life – to move more freely back and forth across that divide. Why? So as to give a face to – to help us face – aspects of human suffering denied articulation and authenticity by our mono-ideational, single-minded concept of social evolution – of absurdities like ‘sustainable development’ – and the all-too-often sadistic psychosocial impulses these produces.

Notwithstanding claims from the progressive side of that divide, our world is still saturated with acute and terrible suffering – suffering that’s often denied articulation, subject to social repression, forgetting, marginalisation or denial. Perhaps this suffering – and the cognitive dissonances that it produces – can only be faced, only find a face, in the ambiguous, messy space between fact and fiction, image and data, regression and progression. The liminal fictive worlds that emerge from that space often appear ‘unnatural’. In the case of Toni Morrison’s Beloved this ‘unnaturalness’ includes horrific violence, infanticide, bestiality, and haunting by a being part poltergeist, part revenant, part succubus; yet also and always still, somehow, Beloved. The practical issue here is, then, how to articulate all this through forms of telling or showing that gives horror a knowable form without explaining it away – and as such both allows and requires us to face that horror.

Study finds brain abnormalities in chronic fatigue patients

Press release from Stanford University School of Medicine –

“Radiology researchers have discovered that the brains of patients with chronic fatigue syndrome have diminished white matter and white matter abnormalities in the right hemisphere.

An imaging study by Stanford University School of Medicine investigators has found distinct differences between the brains of patients with chronic fatigue syndrome and those of healthy people.

The findings could lead to more definitive diagnoses of the syndrome and may also point to an underlying mechanism in the disease process.”

The full news release can be read here at

A video of the presentation from the Stanford ME/CFS Symposium 2014 can be viewed at

Exciting developments at Stanford – article

A new and heartwarming article by Kris Newby published in Stanford Medicine describes the exciting research being undertaken at Stanford. Both Dr Montoya’s ME/CFS Initiative and Mark Davis’s Human Immune Monitoring Centre are undertaking research which is throwing light on the underlying mechanisms of the illness and guiding treatment.

“Montoya’s chronic illness initiative is the largest project in the HIMC at this time, and the complexity of the task ahead is daunting. The staff is looking for meaningful patterns in the many components of the 600 blood samples, including dozens of cytokines, 35 cell-surface proteins, 15 or so types of blood cells, and more than 47,000 genes and regulatory nucleic acids. The challenge is not only to quantify the normal ranges for these components, but also to understand relationships between the components and reverse-engineer the cascade of biochemical reactions that drive immune system processes. He anticipates it will take about a year to run all 600 samples through the processes.”

Montoya achieved his first goal, the launch of the first major ME/CFS research initiative, with a little funding luck and the recruitment of a top-notch research team. With the assistance of Davis and his immune system hackers, he’s close to reaching his second goal: the identification of biomarkers and causes, which will enable physicians to provide a definitive diagnosis and treatment options to patients suffering from this debilitating condition.

The third goal of his hoped-for hat trick will be a whole new way to look at the human immune system. It’s a game changer. It will provide researchers with a new playbook of research strategies to help them discover the causes of other confounding conditions, from Lyme disease to multiple sclerosis to fibromyalgia. It will provide clinicians with a better set of metrics for assessing patients’ health. And then the patients lying in dark rooms with forgotten diseases, whose numbers could fill hundreds of soccer stadiums, will have reasons to stand up and cheer.”

Extracts from long article by Kris Newby  


The presentations from the Stanford ME/CFS Symposium can be watched at –

IiME 2014 Conference report by Rosamund Vallings MB BS

Screen Shot 2014-09-11 at 13.34.19The IiME 2014 Conference report by Rosamund Vallings is available to read at  DVDs of the conference (and past conferences) are available from IiME

“The main conference was opened by Dr Ian Gibson.

The first speaker was Prof Jonathan Edwards (London) who spoke about the lessons learnt for ME from his lifelong study of Rheumatoid Arthritis (RA)…….

Angela Vincent (Oxford, UK) spoke about the searches for antibodies in neurological diseases and posed the question as to whether they could be similar to what may be happening with ME. She talked first about the classical auto-immune disease Myasthenia Gravis (MG)……..

Jonas Blomberg (Uppsala, Sweden) discussed infection-induced auto-immunity in ME.  His lab uses a multiplex technique, and they are able to look at hundreds of different antibodies at a time……

Mady Hornig (New York, USA) addressed her work on Pathogen Discovery. She has looked at the “3-Strike Hypothesis” – genes, environment and timing…….

Carmen Scheibenbogen  (Berlin, Germany) discussed the role of EBV in ME. She described how a subset have disease onset associated with EBV. Then there may be recurrent fever and nodes and the patient describes the illness as if infection is ongoing……

Prof Simon Carding (Norwich, East Anglia) looked at the role for leaky gut and intestinal microbiota in the pathophysiology of ME……

Sonya Marshall-Gradisnik (Gold Coast, Australia) updated us on the current knowledge of immunological biomarkers in ME. She initially described the different cells in the innate (dendritic and NK cells) and adaptive (NKTcells, T cells, B cells and γδT cells) immune systems…..

James Baraniuk (Washington, USA) discussed his work with MRI and victims of Gulf War Illness (GWI). He has explored a model sub-group dating back to 1990-91. Many had experienced acute illness, possibly as a result of sarin exposure. There has been chronic progression of illness over 20 years. Up to 25% of Gulf War veterans were affected……

Julia Newton (Newcastle, UK) focused on the Autonomic Nervous System (ANS)and its relationship to ME. She explained that there is overlap between the ANS and many diseases associated with fatigue. The experience of fatigue is the same in many diseases. She described the ANS, and said that dysautonomia in ME is likely. The fatigue in 89% of those with ME may be due to Orthostatic Intolerance (OI)…..

Amolak Bansal (Surrey, UK) discussed diagnosis and treatment of ME within the NHS. His initial comments mentioned that eventually the current exclusion criteria may go on to be included, and that if anything the new ICC can make things more complicated. His team use the Sutton CFS/ME scoring system, needing 8 out of 13 points to make a diagnosis……

Andreas Kogelnik (California,USA) went on to discuss the diagnosis and treatment of ME in the USA. He stressed that this is not a psychiatric disease……

 Julian Blanco (Barcelona,Spain) gave an external view of ME research strategies……”

Ros Vallings ends by saying, “Things are moving forward rapidly, and while much work lies ahead, the new directions and science have become increasingly exciting.”

The IACFS/ME Conference Syllabus


View of San Francisco from the IACFS/ME conference building

The March 2014 IACFS/ME Conference Syllabus with abstracts for the research presentations is now available to download from or
The conference was held in San Francisco and consisted of a patients day and professionals workshops on the Thursday, followed by three days of presentations by international researchers. It was sponsored by Stanford and took place the day after the Stanford University ME/CFS Symposium – which can be viewed at
The summary of the IACFS/ME conference by Prof Komaroff (Harvard Medical School) can be listened to with power points on YouTube  

Stanford ME/CFS Symposium videos.

The videos from the March 2014 Stanford ME/CFS Symposium were available to view on the Stanford website at –
They cover –
1 – Epidemiology of ME/CFS, What Have We Learned?
 Elizabeth R. Unger, MD, PhD
2 – Daily Fluctuations of Cytokines in ME/CFS Patients
. Jarred Younger, MD
Gene Expression Findings in ME/CFS.
 Amit Kaushal, MD, PhD
3 – Lunch and Learn “Media Portrayal of ME/CFS”
. Moderator: Phil Bronstein
. Panel: Natalie Boulton, David Tuller, Erin Allday
4 – Cardiovascular Aging in CFS. 
Mehdi Skhiri, MD
MRI Findings in ME/CFS. 
Michael Zeineh, MD, PhD
EEG/LORETA Studies Suggest Cortical Pathology in ME/CFS 
Marcie Zinn, PhD, Mark Zinn, MM
5 – Approach to the Medical Care of a ME/CFS Patient: Medical Interview and Diagnostic Pitfalls. 
Anthony L. Komaroff, MD
Microbial Diagnostics and Discovery in ME/CFS
W. Ian Lipkin, MD
Closing Remarks. 
Jose G. Montoya, MD