Voices from the Shadows

Presentation for Belfast. 6th June 2016

A Parent’s Perspective; ‘Lost Voices’ as the years past. 

Natalie BoultonAnna Photo copy

You might ask why am I here? –  I have a long experience of family members having ME.  My mother had ME until her death, following a severe relapse 11 years ago; I am a carer for my daughter who has been severely ill for 26 years, since she was a child; and my youngest son was diagnosed with ME last year.

Screen Shot 2016-06-10 at 19.11.59I appreciate being given the freedom to talk about things that have struck me over the last 10 years. During this time I made the book Lost Voices from a Hidden Illness, and then the film Voices from the Shadows with my son Josh.  Later I went to the Stanford ME/CFS symposium to take part in the Media and ME discussion with a screening of Voices.

Mill Valley 2011

Mill Valley Premiere 201. Dr Montoya & David Tuller

These experiences gave me opportunities to talk to some of the people who have been studying ME for a long time and to hear patient’s stories. This video below is the introduction to the shortened version of Voices from the Shadows shown at the Stanford ME/CFS Symposium.

 

 

I don’t represent any of the ME charities and I have no medical background: these are just my personal thoughts and impressions as a carer.

 

1.

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Anna, Josh & Oliver

I am very aware of the passing of time. My daughter Anna has changed from being a lively, bright, socially and educationally engaged 10 year old, to a 37 year old woman who, following a severe relapse 11 years ago, is almost entirely confined to the house and bed-ridden for much of the day. Last year I contacted many of the people who contributed to the Lost Voices book to see how they were doing 7 or 8 years on. Several have become my daughter’s friends, so I knew about some of the problems

they faced over the years. Sadly, some have deteriorated very, very severely. I expect you know that Emily died three years ago after a horrific time at the hands of hospital consultants. An earlier relapse was precipitated by an OT who “stayed too long”, she said.  Other contributors have also deteriorated severely. I used to chat to one man on the phone when he was up and about.  Now he is unable to walk, has to use a commode at the end of the bed, is only able to wash his face and teeth and is too exhausted to have any one help him. He can’t use a phone, radio, TV, computer, books or papers and can’t bear Screen Shot 2016-06-10 at 19.50.44conversation in the same room, so he is totally isolated. He is skeletal, in spite of eating well. Another contributor, previously a teacher, is now completely confined to bed and has to dictate any essential emails. Linda too is very, very much more ill, suffering excruciating pain, extreme sensitivity to sounds, and paralysis. My impression is that most of the older contributors to the book are deteriorating; the consequences of chronic illness being exacerbated by aging.

Of my daughter’s peers who became ill as children, most are still cared for by their parents. They struggle along, living on a knife-edge, with some quality of life and minimal improvement – if they can avoid infections and their environment remains stable, quiet, caring, supportive and relatively stress free. Unfortunately, as their parents age there is a real sense of living on borrowed time. Parents are not immortal and some have become very ill since taking part in the book or film projects. Several have died

These patients are so ill they often cannot tolerate visitors, let alone unfamiliar carers. They have no experience of dealing with social services, or organising their own care. They simply don’t have the energy, health or resilience needed – and they deteriorate, irrevocably and all too easily.

What I and many other parents need to know is ‘Who will help and care for our sons and daughters when we, parent carers currently ensuring their survival, become too old and ill to care for them, or die?’ Helen Brownlie, the patient advocate for the 25 % Group, is doing all she can to help in these emergencies – when a mother suddenly dies of a heart attack and a father has dementia – but further tragedies are waiting to happen. This is a major problem and I fear it will get much, much worse in the current political climate.

 

2.

Screen Shot 2016-06-10 at 19.35.23Over time it is becoming clear that among my daughter’s friends, not only have many received negligible medical support, rarely seeing a doctor, but high levels of misdiagnosis and missed diagnoses are taking place. One friend has a serious genetic condition which should have been diagnosed and carefully managed for the last 20 years. A wide range of physical conditions have been missed and diagnoses of MS and ME being confused. A few have psychiatric illness, not CFS/ME, and are delighted to receive effective medication. Some have been  wrongly misdiagnosed with eating disorders when they actually have severe ME.

Screen Shot 2016-06-10 at 19.53.09Among her friends who would appear to have been accurately diagnosed with ME/CFS, anaemia, Vitamin D deficiency, and osteoporosis are common, but what is shocking is that often this was only discovered when the patients themselves insisted on tests! An interesting recent development has been the discovery that many of Anna’s ME friends also suffer from POTs, hyperflexibility / EDS, and food and environmental sensitivities, or Mast Cell Activation Disorder. This constellation of conditions is poorly recognised in the UK, but a few have received some medical help. I find it worrying that many, once they have another diagnosis such as POTs, are told that they no longer have ME/CFS and should get the ME diagnosis removed from their notes. This is despite the fact that dysautonomia and POTS in particular, is one of the symptoms included in internationally accepted definitions of ME.

This means that it is extremely difficult to have any real idea of how many children and young people develop ME and remain ill – since no one knows who is ill with what! However, I think it is important to identify patients who have an illness that involves neurological inflammation or damage, and those who experience an often delayed, post-exertional amplification of symptoms. This is absolutely crucial if they are to be protected from treatments that ruin their lives, as happened to the young people in Voices from the Shadows. 

 

3.

When Josh and I were working on the film, Naomi sent us this footage. I was struck by it – her painful difficulty in walking; her lack of coordination and balance – and recognised the same difficulties my daughter had, to a lesser degree. It brought to mind a film made by Dr John Richardson and Dr Spurr way back in 1988, which shows examples of people who became seriously ill following enteroviral infections.

This young woman developed ME while still of school age. She looks perfectly normal while sitting talking, but Dr Richardson asks her to walk – to show her abnormal gait, the effort needed to move her legs, the discomfort and difficulty with balance and coordination. In order to give my daughter a diagnosis of ME in 1992, Dr Spurr undertook a medical history, a thorough physical examination, a range of neurological assessments, filled in a symptom questionnaire and took blood tests, checking for enteroviruses among other things. Years later we saw him regularly and he repeated these assessments of the objective signs of ME each time. These tests were shocking to watch.  Anna’s proprioceptive sense – her sense of where different parts of her body were in relation to each other – was so poor that she couldn’t find the end of her nose when asked, and hit the side of her face. When a Rhomberg test was done she would have instantly fallen over, if he hadn’t caught her, as her balance is almost totally dependent on eyesight and touch. When he stroked different areas of her face with a feather, some areas were too numb to feel. Her perception of vibration from a tuning fork was also unreliable. When a light was shone in her eyes the pupil contracted and enlarged in an erratic way.  Her muscles showed a cogwheel movement and jitter on testing. These assessments were devised by Dr John Richardson to make a diagnosis of ME. They were very thorough compared with the way most patients with ME and CFS are diagnosed in the UK these days.

 

4.

Screen Shot 2016-06-10 at 19.59.31 It would seem that things must be improving for children. In comparison with overall CFS/ME research funding, 3.6 million pounds is a lot of money. However, this is where I want to mention what my husband, who was an academic, calls ‘the politics of research funding’. He is referring to universities’ requirement that researchers win large research grants in order to keep their jobs. This involves presenting the research to auditors as socially useful within a five year framework. This situation – in which research becomes linked to the financial security of universities and staff jobs – distorts how research is conducted. Rather than addressing problems that have proved intractable to date, or where the outcomes are more difficult to predict, it encourages the creation of ‘research problems’ that are relatively easily researched.  Additionally, cliques of researchers have considerable power to influence how public money is allocated. Because research councils need to be seen to be supporting ‘successful research’ there is a bias towards funding mainstream research approaches. Another complication is that senior researchers are often called upon to validate party political agendas rather than remaining objective.

 

5.

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There has recently been a lot of publicity about how common CFS/ME is in children, with a figure of 1 in 50 being quoted. This astonishes me, as I live in Bristol where this research is based and my daughter and I never came across many children with ME locally, even when she was a member of AYME – although there were some schools where two or three children became ill with ME following the particularly nasty virus in 1989 – 90. So, I was puzzled and wondered whether there might have been another epidemic – causing on average every class to have a child with CFS/ME lasting 3 months or more!

What is astonishing about this very big, headline grabbing study, with data from nearly 6,000 children, is that although it claims to be establishing the prevalence of Chronic Fatigue Syndrome in 16 year olds, in fact, these 16 year olds were not classified according to any accepted diagnostic criteria for CFS or ME. Instead “criteria similar to the definition of chronic disabling fatigue in children” were used. A physical examinations is crucial in making a diagnosis, but these children were never seen by a doctor, and those with other illnesses or causes for fatigue weren’t identified or excluded. Several professors of paediatrics in the US objected, pointing out that the paper should have been called, “Chronic Fatigue but not Chronic Fatigue Syndrome at age 16”.  Prof Leonard Jason is involved in a large and very thorough study of the prevalence of youth with ME/CFS. He points out – “Case definitions need to take into account the many reasons that youth can become symptomatic, and whereas some symptoms are experienced by most youth, most of them are not sick or disabled.”

I agree that “it is important that the uncertainties regarding the population prevalence of paediatric CFS are resolved”, but this research is intentionally misleading and makes associations that could have dangerous implications for those with ME. The number  of children said to be suffering from CFS and ME has been enlarged to such an extent that it most likely includes a very large majority who do not have CFS or ME!  In spite of this the paper claims there is an association between CFS, depression and family adversity, saying this warrants further research. But, when those with depression are excluded, there is no association with family adversity, as the paper admits. None-the-less, the paper claims that further research is needed to investigate the extent to which psychological problems and life difficulties predate or follow CFS, and the role of depression requires in-depth analysis. Clearly, the main purpose of this research is to manufacture a rationale for further psychosocial research into CFS/ME.

This type of manipulation and deception through research has a very harmful impact on children with ME and their families. Children with an inflammatory neuro-immune illness, are intentionally hidden among a large population of tired children missing a few days of school.  CFS and ME, (the names are used indiscriminately), is being established as a common condition. As a consequence, when it comes to treatment, management approaches are used that may be of some limited benefit to some fatigued children, but they are likely to be utterly disastrous for the minority with ME.

 

6.

I came across the same hypocritical promotion of treatments that can cause life-long harm to children with ME, a few years ago.  A large group of very ill young people, made a formal complaint to the children’s charity the Association of Youth with ME. They claimed that in unreservedly supporting Graded Exercise Therapy and CBT, and supporting research applying the Lighting Process to children, AYME was breaking its promises that it would “provide all the information members need to make informed health choices”, and “take an impartial position on complementary therapies”. They were horrified at the actions of the charity and wanted to protect other children from the harm they themselves had suffered.

AYME responded by saying – with reference to the PACE Trial – “we would have been negligent to reject those findings when it might help one or more of our members.” The charity refused to acknowledge the harm caused to some its own members by the treatments it blindly supported. Hanging was abolished in the UK because it was found that miscarriages of justice occasionally lead to innocent people being hanged. It seems that children with ME are not eligible for similar protection from harm – whether from a conviction that some children will benefit and the others just don’t matter; a desire to protect the reputations of Universities and researchers; the financial pressures for research funding; the expansion of the influence of the very large Bath CFS centre; the status of AYME with its links to these organisations; or the powerful influence of all of these working in mutually enhancing cooperation.

 

7.

This recent BBC news quote by the paediatrician Dr Esther Crawley fills me with alarm. “Children attending my specialist service only attend two days a week of school on average. This means that only the most severe cases are getting help.” (My highlight)

Even NICE describes severe CFS/ME patients as housebound and may need help with all aspects of self-care.  So why claim these relatively active children are ‘the most severe cases’, and that ‘the most severe cases’ are getting help?  This is symptomatic of a worrying and more widespread denial of the shocking severity of the illness in children and adults with severe ME.

 

8.

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Lynn Gilderdale and Naomi both needed to be tube fed when they deteriorated following mismanagement of their illness.

One of my friends has a daughter who is ill with severe ME. In her medical notes it was recorded, less than three years ago, that the hospital was advised by the influential regional CFS paediatrician that; “N.G. [naso-gastric] tube feeding is not part of the spectrum of even severe CFS”. Alternative diagnoses of an eating disorder, or a mental health problem were therefore suggested, even though the child had not even been seen by that paediatrician, at that point. The child had originally been admitted to hospital with a mistaken diagnosis of idiopathic chronic pain syndrome –  for which the treatment was intensive physiotherapy. This had caused her to deteriorate disastrously, to the point of needing tube feeding and experiencing intermittent paralysis in her legs and arms. Further problems arose later when the same paediatrician, (having by then seen the child briefly), informed the hospital that paralysis is not part of the clinical presentation of CFS/ME, and gave a new diagnosis of Disassociation/conversion disorder. It was also advised that children do better if the anxiety, expected to develop in a long term condition, is treated. I think many people would question treatment on the basis of such an assumption. A few months later while very, very severely ill, the child was subjected to a lengthy interview by social services who were concerned whether, if such severe symptoms exclude a diagnosis of ME, could her parents be making her ill? Within days of making a superhuman effort to answer all their questions and allay their concerns, the child lost her ability to use her voice.

The need for tube feeding and the occurrence of paralysis is widely recognized by the International ME community as occurring in some very severe cases. Prof Rowe, CFS paediatrician at Johns Hopkins Prof Peter RoweUniversity School of Medicine, explains that not only is tube feeding sometime necessary in children with ME, but they may be so allergic to foods that an amino acids feed may be needed.  The denial of such severe ME symptomatology, by a very influential UK CFS paediatrician, proved to be a disaster for the child and her family. Eventually, in desperation, they turned to Dr Nigel Speight for help, asking him to visit and make a diagnosis. His support and protection has enabled the child to improve considerably. She no longer experiences paralysis and no longer needs tube feeding, but her voice hasn’t yet recovered.

 

9.

Action for ME recently announced funding for research into the incidence of severe ME, but they are not yet making public what criteria will be used to make a diagnosis of ‘severe ME’. According to Dr Crawley’s statement on AfME’s website and facebook, 3,400 paediatricians and doctors around the UK will be contacted to ask if they have seen a case of severe ME in the previous month. The researchers will request “information to determine if other diagnoses have been considered (eg. anxiety, depression, eating disorders).”  I have seen, with my own eyes, hospital notes recording a very influential CFS paediatrician’s advice that neither tube feeding nor paralysis are consistent with a diagnosis of severe CFS/ME.  So I am concerned that this research could have the potential to influence paediatricians and doctors around the UK, to accept a similarly restricted definition of severe CFS and ME. My experience is that suchScreen Shot 2016-06-11 at 20.04.19 severe ME in young people is often preceded by serious mismanagement of their ME having taken place: the consequence of a wrong diagnosis or ignorance. This happened to my daughter’s friends Lynn Gilderdale and Naomi, as well as the child ‘B’ in Voices from the Shadows, Sophia Mirza and other young people we know.

I am concerned that a stealthy realignment is taking place, and that what is called CFS, ME or CFS/ME, interchangeably and depending on the audience, is being redefined to focus on the large number of generally fatigued children who are much more convenient subjects for research and much more amenable to behavioural management programmes. Young people who deteriorate severely with such management could then be dismissed as having other diagnoses, not ME or CFS! Individually these families of children with ME are now very, very vulnerable. There are other local paediatric research projects which could have a detrimental impact on children with ME.  One study, MAGENTA, is reminiscent of the discredited PACE Trial and compares Graded Exercise Therapy with activity management to assess cost effectiveness; another will start to develop interventions for children who are severely affected with CFS/ME. A previous project, with results currently due to be released, involved children in learning the Lightning Process – the most psychologically harmful experience my daughter has ever had.

10.

So when I consider the future for Anna and her friends and for the younger generation of children with ME, I am horrified.  I am  horrified at the inexorable expansion of the destructive influence of a  self-perpetuating CFS/ME research and delivery mechanism, involving a Russell Group University, a very large paediatric CFS centre with outposts around the country and a children’s charity – with support from the Science Media Centre, and even the CFS/ME Research Collaborative!

01The influence of this powerful alliance is sweeping all who stand in its way into oblivion – not only severely ill ME children and their families, but also the only UK consultant specialist in severe paediatric ME who had the courage to be effective in supporting and protecting them. He has now been silenced via the GMC: is not permitted to see patients, speak at conferences or continue his role with international teams of paediatric ME/CFS specialists. As the mother of a chronically ill daughter, I find the outlook terrifying.

 

The PACE Trial discredited

Recognition of the flaws in the PACE Trial has become more substantial as a result of David Tuller’s investigative reports on Virology Blog. Rebecca Goldin, a Prof of Mathematical Sciences, has produced a 7000 word critique  and Julie Rhmeyer has also written an essay – see below. James Coyne  has blogged at length and George Faulkner has produced a substantial report for The Centre for Welfare Reforms,  covering the role of the PACE Trial   –  “In the Expectation of Recovery” is downloadable at  http://bit.ly/expect-recovery. An editorial in The Centre for Welfare Reforms refers to the issues discussed and an open letter to the Lancet http://www.virology.ws/2016/02/10/open-letter-lancet-again/ is signed by 44 professors and other significant people in ME/CFS.

An Editorial in Stats.org  ( http://www.stats.org/editorial-on-pace/ ) explains the significance of what is at stake.  – “The PACE trial was “rigorously designed,” according to CNN, and it was published in one of the most prestigious medical journals, The Lancet, so its conclusions not only had the power to affect the way the condition was treated, they had the power to set the agenda for further research, potentially foreclosing other approaches.

As a result of PACE, the UK’s National Health Service, the Centers for Disease Control, the Mayo Clinic, and Kaiser all ended up recommending cognitive behavioral therapy and exercise for ME/CFS. There is now a PACE-like trial in children—MAGENTA. PACE has become the paradigm for understanding a condition affecting millions of people.”……

The editorial continues – “Because we believe that study design is a critical issue in science, and because statistics is central to understanding study design, we felt it was important to look at PACE from this perspective….

The conclusion of Rebecca Goldin’s 7,000-word analysis on PACE’s design is this: “The best we can glean from PACE is that study design is essential to good science, and the flaws in this design were enough to doom its results from the start.” http://www.stats.org/pace-research-sparked-patient-rebellion-challenged-medicine/   PACE: The research that sparked a patient rebellion and challenged medicine by Rebecca Goldin | Mar 21, 2016 Rebecca Goldin is Professor of Mathematical Sciences at George Mason University and Director of STATS.org

The editorial in Sense about Statistics explains of Julie Rehmeyer – “Julie Rehmeyer, has written  a powerful essay for our series “Epistemically Challenged” (over at Sense About Science USA) about her own experience of ME/CFS, and how it changed her view of science. As Rehmeyer is the most recent recipient of the American Statistical Association’s Excellence in Statistical Reporting Award (an honor we think Joseph Pulitzer would have considered equal to his eponymous prizes given his love of statistics), we took her criticism of PACE as another important alarm.”  http://www.senseaboutscienceusa.org/epistemically-challenged-julie-rehmeyer/

David Tuller’s articles on PACE

David Tuller’s numerous article on ME/CFS and the PACE Trial on Virology Blog are listed and linked to at   http://www.virology.ws/mecfs/

Chronic Fatigue Syndrome and the CDC: A Long, Tangled Tale

TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study

TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study (second installment)

TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study (final installment)

PACE trial investigators respond to David Tuller

David Tuller responds to the PACE investigators

Trial By Error, Continued: Did the PACE Study Really Adopt a ‘Strict Criterion’ for Recovery?

Trial By Error, Continued: Why has the PACE Study’s “Sister Trial” been “Disappeared” and Forgotten?

An open letter to Dr. Richard Horton and The Lancet

Trial by error, Continued: PACE Team’s Work for Insurance Companies Is “Not Related” to PACE. Really?

A request for data from the PACE trial

Revisiting the PLoS One economics analysis of PACE

Trial By Error, Continued: Questions for Dr. White and his PACE Colleagues

Trial By Error, Continued: Did the PACE Trial Really Prove that Graded Exercise Is Safe? (with Julie Rehmeyer)

Trial By Error, Continued: More Nonsense from The Lancet Psychiatry

Trial By Error, Continued: A Few Words About “Harassment”

An Open Letter to the Lancet, Again

‘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  http://www.virology.ws/?s=Trial+by+Error http://www.virology.ws/2015/10/21/trial-by-error-i/ http://www.virology.ws/2015/10/22/trial-by-error-ii/ http://www.virology.ws/2015/10/23/trial-by-error-iii/

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  http://www.investinme.eu/index.shtml#agenda

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.http://www.meassociation.org.uk/news-too/ 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 http://www.iainbiggs.co.uk/2014/10/locating-the-gothic/

“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 http://voicesfromtheshadowsfilm.co.uk 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 http://med.stanford.edu/news/all-news/2014/10/study-finds-brain-abnormalities-in-chronic-fatigue-patients.html

A video of the presentation from the Stanford ME/CFS Symposium 2014 can be viewed at http://med.stanford.edu/chronicfatiguesyndrome/2014SymposiumVideo.html

Exciting developments at Stanford – article

A new and heartwarming article http://stanmed.stanford.edu/2014fall/immune-system-disruption.html 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 http://stanmed.stanford.edu/2014fall/immune-system-disruption.html  

 

The presentations from the Stanford ME/CFS Symposium can be watched at – http://mecfs.stanford.edu/2014SymposiumVideo.html

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 http://www.investinme.eu/report.html  DVDs of the conference (and past conferences) are available from IiME   http://www.investinme.eu/2014%20Conference%20DVD%20Order.html

“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.”