Chronic Fatigue Syndrome: Hidden in Plain Sight –  by Llewellyn King 

The full article is at http://open.salon.com/blog/llewellyn_king/2013/03/30/chronic_fatigue_syndrome_hidden_in_plain_sight

Quotes – “I am a reporter and my beat is hell.…

…. It is the hell of those who live with a disease that is incurable, has inadequate therapies, indifferent government attitudes, social stigma and no strong public voice…

I have heard from patients all over the world, but those in Britain are among the most pitiful. The National Health Service has favored low-cost psychiatry over high-cost internal medicine…. The medical hell about which I write is without national borders.

I find the patients, who have e-mailed me and whom I have met, to be angry as well as desperate. They wonder why have they been abandoned? Why do other diseases get more attention when they have fewer sufferers? Why is the media so indifferent to them? Why does the government spend so, so little (about $6 million a year) on researching a cure?

All that is incontrovertibly known about CFS is that it is a disease of the immune system. It kills slowly through heart disease and cancer. It also has a high suicide rate.

There is a sore irony that nowadays HIV/AIDS, which affects 1.1. million people in the United States and 34 million worldwide, is almost without stigma and has many public advocates – and many celebrity advocates like pop superstar Elton John — raising money for research.

CFS patients feel they are stigmatized, and often are, as malingerers.  …

One million CFS sufferers in the United States and millions more elsewhere  will continue to suffer until society gets behind the moral  imperative of researching a cure. The immediate needs are to comfort  the sick, educate the doctors and shame the government.”

Llewellyn King is executive producer and host of “White House Chronicle” on PBS. His YouTube channel ME/CFSAlert. now has 41 interviews with doctors, researchers and others involved with ME and CFS.

The new somatic symptom disorder in DSM-5 risks mislabeling many people as mentally ill – is the title of an article by Allen Frances, chair of the DSM-IV task force, just published in The BMJ.

This is of particular concern to people with CFS and ME since a very popular model for the illness, (originally  proposed by Simon Wessely and Trudy Chalder in the early 90’s)  is based on the idea that after an initial triggering infection patients are overly anxious about their symptoms, particularly when they  increase after exertion, and so they become trapped in a vicious cycle of rest and activity avoidance. Their 1991 paper proposes,”It is plausible that an initial infective trigger  may begin a cycle of in which both attributional and cognitive factors fuel avoidant behaviour. The initial symptoms, in particular fatigue and myalgia, engender a state of “learned helplessness”… ”  This model now leaves ME and CFS patients vulnerable to being diagnosed as having a psychiatric condition –  ‘somatic symptom disorder’!

Belief in this Wessely/Chalder model is now widespread, in spite of the fact that the model did not hold up when tested by the PACE Trail. The response rate for CBT and GET, given in addition to standard medical care, was very low and at least 80% of the patients selected for and completing the trial did not improve significantly. If the model was accurate, most should have improved, recovered and returned to work, or at least stopped receiving disability benefits. None the less, the PACE results were a much better outcome for the researchers model of CFS than the sister MRC funded research, the FINE Trail. This found the treatments were totally ineffective:  “At one year after finishing treatment (70 weeks), there were no statistically significant differences in fatigue or physical functioning between patients allocated to pragmatic rehabilitation [a programme of gradually increasing activity using elements of CBT and GET] and those on treatment as usual.” http://www.ncbi.nlm.nih.gov/pubmed/20418251

The International Consensus Criteria for ME  states that a cardinal symptom of ME is “a pathological low threshold of fatigability that is characterised by an inability to produce sufficient energy on demand. There are measurable, objective, adverse responses to normal exertion, resulting in exhaustion, extreme weakness, exacerbation of symptoms, and a prolonged recovery period.”

It would seem that any concern patients feel about the restrictions this symptom imposes on their lives can now be assessed as “dysfunctional thoughts, feelings, or behaviours”,  making the patient eligible for a psychiatric diagnosis of ‘somatic symptom disorder’ – along with 15% of cancer and heart disease patients and 7% of the healthy population!

The press release for this BMJ article is here  http://www.bmj.com/press-releases/2013/03/18/new-disorder-could-classify-millions-people-mentally-ill

Press Release : New disorder could classify millions of people as mentally ill

Monday, March 18, 2013 – 12:54 – New condition that may lead to “inappropriate medical decision making” warns expert.

Personal View: The new somatic symptom disorder in DSM-5 risks mislabeling many people as mentally ill.

Millions of people could be mislabeled as mentally ill when psychiatry’s bible of diagnoses is updated in May, warns a senior doctor in this week’s BMJ.

The next edition of the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM-5) – used around the world to classify mental disorders – will include a new category of somatic symptom disorder.

But Allen Frances, Chair of the current (DSM-IV) task force warns that the DSM-5 definition of somatic symptom disorder “may result in inappropriate diagnoses of mental disorder and inappropriate medical decision making.”

The new category will extend the scope of mental disorder classification by eliminating the requirement that somatic symptoms must be “medically unexplained” he explains. In DSM-5, the focus shifts to “excessive” responses to distressing, chronic, somatic symptoms with associated “dysfunctional thoughts, feelings, or behaviours.”

His concern is supported by the results of the DSM-5 field trial study. Somatic symptom disorder captured 15% of patients with cancer or heart disease and 26% with irritable bowel syndrome or fibromyalgia, and had a very high false-positive rate of 7% among health people in the general population.

He points out that, previous DSM criteria “have always included reminders to clinicians to rule out other explanations before concluding that any mental disorder is present. But his suggestions to the DSM-5 work group that similar reminders should be included this time were rejected.

Every diagnostic decision is a delicate balancing act between definitions that will result in too much versus too little diagnosis – the DSM-5 work group “chose a remarkably sensitive definition that is also remarkably non-specific,” warns Frances.

This, he argues “reflected a consistent bias throughout DSM-5 to expand the boundaries of psychiatric diagnosis with what I believe was insufficient attention to the risks of the ensuing false positive mislabeling.”

“The DSM-5 diagnosis of somatic symptom disorder is based on subjective and difficult to measure cognitions that will enable a “bolt-on” diagnosis of mental disorder to be applied to all medical conditions, irrespective of cause,” he adds.

“Clinicians are best advised to ignore this new category. When a psychiatric diagnosis is needed for someone who is overly worried about medical problems the more benign and accurate diagnosis is adjustment disorder.”

Contact:
Allen Frances, Chair of the DSM-IV task force, Coronado, CA, USA
allenfrances@vzw.blackberry.net

What ME Patients Wanted: “Don’t import psychiatric mismanagement of ME into Northern Ireland” they asked.

What ME Patients Got: Mr Jim Wells, the Health Minister-elect told them: “We are the converted. ME is NOT a psychiatric disorder”.

Antoinette Christie and the group she chairs, ME Support Northern Ireland, arranged an amazing event at Stormont on Feb 18th with a screening of “Voices” and a presentation by Horace Reid. There was a good attendance of MLAs – Sue Ramsey: West Belfast, Samuel Gardiner:Upper Bann, Kieran McCarthy: Strangford, Roy Beggs:East Antrim, Jo-Anne Dobson:Upper Bann. Jim Wells deplored antiquated attitudes to the illness held by some doctors and congratulated the committees of MESNI and NEWry & Mourne ME/FM for their efforts to improve ME service within the NHS and promised his continuing support. Alderman William Leathem who is Mayor of Lisburn City Council also attended.

“The Long Gallery was completely silent for the one hour duration of the film. MLAs stayed for the entire viewing, and a number of patients were in tears much of the time. There was a feeling that this breakthrough documentary should be shown far and wide, among the patient constituency and beyond it.” – from the MESNI Newsletter

A very fine newsletter about the event – produced by MESNI and Horace Reid – can be viewed here on the oneagleswings.me.uk website.

A copy of the brochure can be downloaded here.

On 12th February 2013, without warning, local police and officials removed a sick ME patient, Karina Hansen, from her home in Holstebro. Both Karina and her mother who was also present, opposed the removal in the strongest  possible way – yet still Karina was transferred to Hammel Neuroscience Center.

Karina’s mother and relatives have been prohibited from contacting her for the next 14 days. They are now kept informed by a daily phone call from a physician at the centre who does not even know about the disease, but says that the centre is working with the Research Clinic for Functional Disorders and their understanding of ME.  The case is now handled by Karina’s lawyer.

The Danish  ME Association is following further developments and will keep members informed here http://www.me-foreningen.dk/  https://www.facebook.com/meforeningen.dk  The original statement is to be found there in Danish. I apologise for inaccuracies in translation – Please correct me…

On the 18th of February ME Support NI are screening “Voices from the Shadow” in The Long Gallery in Stormont, Parliament Buildings. Sue Ramsey, MLA and Chair of the Health Committee is sponsoring the event. All 108 MLA’s have been invited and many of them, from all major political parties, are hoping to attend including the Health Minister Edwin Poots. ME Support NI  are hoping to see representatives from the Belfast Trust, the Southern Health & Social Care Board, Newry & Mourne M.E. & Fibromyalgia Support, representatives from Education, Suicide Awareness,, Disability Action and a number of G.Ps and medical consultants. It is an invite only event and and is nearly fully booked, but if anybody is interested in attending please contact ME Support NI as soon as possible and they will get back to you if any places become available.

The new dvds of “Voices from the Shadows” are now available. These new dvds have the choice of being viewed either without subtitles, or with subtitles in Swedish, Dutch, German, Czech, English, French, Italian, Japanese or  Spanish. These dvds  are for ‘personal’ use only and for giving to medical professionals, politicians and other relevant individuals. They are not licensed for public screenings – see below.

They can be bought from the ‘shop’ page here or from the following organisations and individuals –

Sweden – www.rme.nu

The Netherlands contact@me-cvsvereniging.nl

Belgium http://www.wakeupcallbeweging.be

Germany  www.lost-voices-stiftung.org

Italy antonia.frigo@gmail.com and some dvds are also available through CFS Associazione Italiana  cfs@cro.it

Japan www.markhouse-projects.com

Czech Republic more info about purchase is available in an article at  www.me-cfs.cz

If you wish to organise a public/educational screening of the film please contact us. The film is not intended for fundraising efforts. Contact page.

The eighth Invest in ME  International Conference is on May 31st 2013. This years speakers announced here.

Dr Ian Gibson, Former Dean of Biological Sciences, UEA UK – Conference Chair.

Associate Professor Mady Hornig, Center for Infection and Immunity (CII), Columbia University Mailman, School of Public Health, New York, USA

Professor Sonya Marshall-Gradisnik   School of Medical Sciences, Griffith University  Australia

Dr Carmen Scheibenbogen Professor for Immunology and Deputy Chair, Institute of Medical Immunology, Berlin Charité, Germany  

 Dr Clare Gerada, Chair Royal College of GPs,  UK

Professor Olav Mella, Bergen University Hospital, Norway

Dr Øystein Fluge, Bergen University Hospital, Norway  

Dr Andreas Kogelnik, Director of the Open Medicine Institute, USA  

Dr Amolak Bansal, Consultant Clinical Immunology and Immunopathology, Epsom and St Helier University Hospitals NHs Trust, Surrey, UK  

Others to be announced later.

DSM-5 or DSM-V is the planned fifth edition of the American Psychiatric Association’s (APA) Diagnostic and Statistical Manual of Mental Disorders. It is due for publication in May 2013. It is likely to affect all of us one way or another.

Please read the latest article by Allen Frances in Psychology Today. Jan 16th 2013.  here    It is titled – Bad News: DSM 5 Refuses to Correct Somatic Symptom Disorder – Medical illness will be mislabeled mental disorder.

Allen Frances, M.D., was chair of the DSM-IV Task Force and of the department of psychiatry at Duke University School of Medicine, Durham, NC. USA. He is currently professor emeritus at Duke.

He starts- “Many of you will have read a previous blog prepared by Suzy Chapman and me that contained alarming information about the new DSM 5 diagnosis ‘Somatic Symptom Disorder.’ SSD is defined so over inclusively by DSM 5 that it will mislabel 1 in 6 people with cancer and heart disease; 1 in 4 with irritable bowel and fibromyalgia; and 1 in 14 who are not even medically ill.”

He goes on to say later “We have failed and DSM 5 has failed us. For reasons that I can’t begin to fathom, DSM 5 has decided to proceed on its mindless and irresponsible course. The sad result will be the mislabeling of potentially millions of people with a fake mental disorder that is unsupported by science and flies in the face of common sense.”

It is important as many people as possible read this article and if possible write informed comments,  to show how much concern there is about these changes.  So please ask others to read this article too.

The IACFS/ME Primer – “Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: A Primer for Clinical Practitioners” – is now available on the USA Department of Health and Human Services (DHHS) website where it can be found in the National Guideline Clearinghouse which is part of the Agency for Healthcare Research and Quality (AHRQ).

It can be viewed, downloaded and printed here http://www.guidelines.gov/content.aspx?id=38316  The Primer underwent extensive review to ensure it met the required standard. The Primer states “This primer uses the 2003 Canadian clinical case definition for ME/CFS  because of its emphasis on clearly described core symptoms of the illness…. The newly published 2011 International Consensus Criteria for ME are not yet in general use.”

Academics and even a major charity’s medical advisor have been signing up to Prof Wessely’s attempts to hold patients responsible for the dearth of research here in the UK, but in the USA things have been moving in a direction which delights patients and carers and brings hope to us all in an otherwise very depressing situation.

The Open Medicine Institute in California was set up in 2009 by Dr Andreas Kogelnik. The website says –

“Patients with ME/CFS desperately need answers. We are convinced these answers are readily available if we apply the best resources in a large-scale, concerted effort. Bringing together the right experts and the most advanced technologies to deliver actionable results is a necessary condition for success that has been a long time coming to this field.”

“OMI-MERIT (ME Roundtable on Immunology and Treatment) is a strategic initiative of OMI and its collaborators to bring together leading clinicians and researchers to tackle this debilitating but underserved disease. The MERIT group is focused on developing and applying a multi-factorial approach to the discovery of new diagnostic and treatment solutions for ME/CFS.”

OMI have a  focus on Neuroimmune Diseases and Cancer. “The Institute is currently focused on understanding, developing treatments, and finding cures for neuro-immune diseases including ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Autism, Multiple Sclerosis, and other conditions. There are also plans to apply the Institute’s model to a range of diseases including cancer and Alzheimer’s—diseases which have proved difficult, if not impossible, to decode and treat using today’s standard approaches.”

Their priority projects are listed and described at  http://openmedicineinstitute.org/research-initiatives/mecfs-merit/  They include

1-Treatment: Phase 1: A Large-scale, Randomized, Placebo-controlled Trial of Rituximab and Valgancyclovir

2 – An International Neuro Registry and Biobank

3 – Protein Panel in Treated and Untreated Patients

4 – Treatment: Phase 2: Other Therapy Mono and Combination Pilots

5 – Immunologic Biomarker Exploration Studies

6 – DNA Genetics

7 – Comprehensive Viral Testing

8 – Advanced Immunologic Biomarker Study 2

10 – Treatment: Phase 3: Natural and Over-the-Counter Substances  -will include Moringa olifera, GcMAF, Vit B12, and artemesin

There is a very impressive International list of those involved – OMI-MERIT Initiative Signators (in Alphabetical Order)

Drs. Lucinda Bateman (Fatigue Consultation Clinic & Univ of Utah, UT, US),  Allison Bested (Complex Chronic Disease Clinic, Canada),   Yenan Bryceson (Karolinska Institute, Sweden),   Ron Davis (Stanford Genome Technology Center, CA, US),   David Dreyfus (Yale/Private practice, US/Israel),   Oystein Fluge (Haukeland University Hospital, Norway),   Mady Hornig (Columbia Univ, NY, US),   Nancy Klimas (NOVA Univ, FL, US),   Andy Kogelnik – Chair (Open Medicine Institute, CA, US),   Charles Lapp (Hunter Hopkins Center, NC, US),   Jay Levy (UCSF, CA, US),   Alan Light (University of Utah, UT, US),   Kathleen Light (University of Utah, UT, USA),   Sonya Marshall-Gradisnik (Griffith University, Australia),   Mauro Malnati (San Raffaele Scientific Institute, Italy),   Olav Mella (Haukeland University Hospital, Norway),   Jose Montoya (Stanford University, CA, US),   David Patrick (Complex Chronic Disease Clinic, Canada),   Dan Peterson (OMI and Sierra Internal Medicine, NV, US),   Simone Pensieroso (San Raffaele Scientific Institute, Italy),   Peter Rowe (Johns Hopkins, US),   Charles Shepherd (Private practice, UK),   Ila Singh (Mount Sinai School of Medicine, NY, US),   Carmen Scheibenbogen (Charité Berlin, Germany),   Chris Snell (University of the Pacific, US),   Staci Stevens (Open Medicine Institute, US) and  Rosamund Vallings (Private practice, New Zealand).