Category: ME in BMJ

The Elephant in the Room Series Two: Use of “Somatoform Disorders” and “Functional somatic syndromes”

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APA    DSM    DSM-IV    DSM-V    WHO    ICD    ICD-10    ICD-11    American Psychiatric Association    Diagnostic and Statistical Manual of Mental Disorders    World Health Organization    Classifications    DSM Revision Process    DSM-V Task Force    DSM-V Somatic Distress Disorders Work Group    Somatic Symptom Disorders Work Group    DSM-ICD Harmonization Coordination Group    International Advisory Group    Revision of ICD Mental and Behavioural Disorders    Global Scientific Partnership Coordination Group    ICD Update and Revision Platform    WHO Collaborating Centre    CISSD Project    MUPSS Project    Somatoform    Somatisation    Somatization    Functional Somatic Syndromes    FSS    MUS    Myalgic encephalomyelitis    ME    Chronic fatigue syndrome    CFS    Fibromyalgia    FM    IBS    CS    CI    GWS

 

The Elephant in the Room Series Two: Use of “Somatoform Disorders” and “Functional somatic syndromes”

Two good examples of the use of the terms “Somatoform disorders”, “Chronic multiple functional somatic symptoms” and “Functional somatic syndromes” in relation to chronic fatigue syndrome and myalgic encephalomyelitis in UK medical press and medical journals:

1] In December, last year, Pulse magazine ran an article by Dr Christopher Bass on the so-called “somatoform disorders” in which chronic fatigue syndrome, IBS and fibromyalgia were cited. The ME Association and others responded.  The ME Association’s response can be read here

See previous ME agenda posting, 26 December 2008:

Dr Chris Bass (PULSE somatoform disorders article) and UNUM

 

2] In 2002, the BMJ published two reviews in their series Clinical review: ABC of psychological medicine:

Chronic multiple functional somatic symptoms: Christopher Bass, Stephanie May

and

Functional somatic symptoms and syndromes: Richard Mayou, Andrew Farmer

which listed the following under

“Some common functional symptoms and syndromes”

  • “Muscle and joint pain (fibromyalgia)
  • Low back pain
  • Tension headache
  • Atypical facial pain
  • Chronic fatigue (myalgic encephalomyelitis)
  • Non-cardiac chest pain
  • Palpitation
  • Non-ulcer dyspepsia
  • Irritable bowel
  • Dizziness
  • Insomnia”

The BMJ ABC of psychological medicine series were later published in a monograph which is still in print:

ABC of Psychological Medicine (ABC Series)
by Richard Mayou (Editor), Michael Sharpe (Editor), Alan Carson (Editor)

2003, Paperback, 72 pages
ISBN-10: 0727915568
ISBN-13: 978-0727915566

Links for full texts of the Bass, May; Mayou, Farmer BMJ ABC Series reviews are included in the 27 December 2008 ME agenda posting:

Selected papers co-authored by Dr Christopher Bass

In 1995, Richard Mayou co-edited:

Treatment of Functional Somatic Symptoms
Edited by Richard Mayou, Christopher Bass and Michael Sharpe

1995, Hardback, 472 pages
ISBN-13: 9780192624994
ISBN-10: 0192624997

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Richard Mayou and Michael Sharpe were members of the internationl CISSD Project, co-ordinated by Dr Richard Sykes between 2003 and 2007, and administered by UK patient organisation Action for M.E. Prof Michael Sharpe was the CISSD Project’s UK Chair; Prof Kurt Kroenke was the CISSD Project’s international chair.

In May 2005, in collaboration with Kurt Kroenke et al, Mayou and Sharpe, published a review in which the authors set out their proposals for revisions to the so-called “Somatoform Disorders” for DSM-V.

FREE Review   Mayou R, Kirmayer LJ, Simon G, Kroenk K, Sharpe M: Somatoform disorders: time for a new approach in DSM-V. Am J Psychiatry 2005 May;162(5):847-855.

http://www.ncbi.nlm.nih.gov/pubmed/15863783
http://ajp.psychiatryonline.org/cgi/content/full/162/5/847
http://ajp.psychiatryonline.org/cgi/reprint/162/5/847

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Related document: DSM-V and ICD-11 Directory Downloaded here in MS Word format: http://tinyurl.com/dsm-vdirectory

Related article: Mind over body? 13 March 2009, Clare Wilson: Interview with Professor Simon Wessely

 

Selected papers co-authored by Dr Christopher Bass

See also posting:

https://meagenda.wordpress.com/2008/12/26/dr-chris-bass-pulse-somatoform-disorders-article-and-unum/

**********************************************************************************

Selected papers and articles co-authored by Dr Christopher Bass, consultant in liason psychiatry, John Radcliffe Hospital, Oxford

http://www.bmj.com/cgi/content/full/325/7359/323

BMJ 2002;325:323-326 ( 10 August )

Clinical review

ABC of psychological medicine

Chronic multiple functional somatic symptoms

Christopher Bass, Stephanie May.

Full text in html format: http://www.bmj.com/cgi/content/full/325/7359/323

PDF format: BMJ ABC Bass

The previous article in this series described the assessment and management of patients with functional somatic symptoms. Most such patients make no more than normal demands on doctors and can be helped with the approach outlined. However, a minority have more complex needs and require additional management strategies. These patients typically have a longstanding pattern of presenting with various functional symptoms, have had multiple referrals for investigation of these, and are regarded by their doctors as difficult to help…

Read full BMJ ABC Clinical review: Chronic multiple functional somatic symptoms, Bass and May in html format here

Read all Rapid Responses to Chronic multiple functional somatic symptoms, Bass and May here

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The previous article in this BMJ Clinical review: ABC of psychological medicine series, to which Bass and May refer, can also be read in full on the BMJ website. Note the inclusion by Mayou and Farmer of “Chronic fatigue (myalgic encephalomyelitis)”. Note also (as Dr Abhijit Chaudhuri highlights in his Rapid Response to the Bass and May article) that Bass and May had illustrated their article with a ‘Summary of a 15 year “segment” of the life of a patient with chronic multiple functional somatic symptoms’ in which they report this female patient as having made a “self-diagnosis of myalgic encephalomyelitis” and having joined a “self-help group”.

http://www.bmj.com/cgi/content/full/325/7358/265

BMJ 2002;325:265-268 ( 3 August )

Clinical review

ABC of psychological medicine

Functional somatic symptoms and syndromes

Richard MayouAndrew Farmer

Full text in html format: http://www.bmj.com/cgi/content/full/325/7358/265

PDF format: BMJ ABC Mayou

Concern about symptoms is a major reason for patients to seek medical help. Many of the somatic symptoms that they present with such as pain, weakness, and fatigue remain unexplained by identifiable disease even after extensive medical assessment. Several general terms have been used to describe this problem – somatisation, somatoform, abnormal illness behaviour, medically unexplained symptoms, and functional symptoms. We will use the term functional symptoms, which does not assume psychogenesis but only a disturbance in bodily functioning.

Some common functional symptoms and syndromes

  • Muscle and joint pain (fibromyalgia)
  • Low back pain
  • Tension headache
  • Atypical facial pain
  • Chronic fatigue (myalgic encephalomyelitis)
  • Non-cardiac chest pain
  • Palpitation
  • Non-ulcer dyspepsia
  • Irritable bowel
  • Dizziness
  • Insomnia

Read full BMJ ABC Clinical review: Functional somatic symptoms and syndromes, Mayou, Farmer in html format  here

Read all Rapid Responses to Functional somatic symptoms and syndromes, Mayou, Farmer (to which Dr Chaudhuri also responded) here

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The Bass and May BMJ Clinical review: “Chronic multiple functional somatic symptoms” provoked some interesting Rapid Responses, including this response from Dr Abhijit Chaudhuri who, in 2002, was still based at University of Glasgow.

http://www.bmj.com/cgi/eletters/325/7359/323#24583

Through the looking glass

12 August 2002

A. Chaudhuri,

Clinical Senior Lecturer in Neurology

University of Glasgow

Send response to journal:

Re: Through the looking glass

Bass’ and May’s review of “chronic multiple functional somatic symptoms” (CMFSS) deserves a few comments. The authors have essentially proposed two diagnostic criteria for CMFSS: first, the “thickness of patients’ paper notes” and second, observations of the medical and non- medical health service staff (presumably overriding the observations made by patient’s own family members or his/her relatives). I congratulate the BMJ, the editors of this review series and, of course, the authors, for introducing a novel use of the measuring tape in clinical medicine. My only suggestion is that it would be very useful to know the numerical “cut -off” for the case note thickness for the purpose of referral to the psychiatry unit and perhaps the GPs ought to be advised to mention this at the time of referral of their presumed CMFSS patients to the specialist service, e.g. “Thank you for seeing this patient with case note thickness of little over three and three-quarter inches”.

Am I being facetious when I say this? In my practice, the thickest case notes occasionally belonged to patients who were treated in the psychiatry units for considerable length of time for what was later discovered to be a neurological disease. To me, the statement that nearly one out of every ten patients admitted to the tertiary care have CMFSS also appears rather exaggerated. Even if there are published data to support this figure (which have not been cited), I suspect that the assessment might have been prone to selection bias. More surprisingly, however, Bass and May fail to mention that follow-up studies at the academic centres of patients diagnosed to have functional disorders did reveal a staggering misdiagnosis rate of 20-40% in the past.[1] The most common errors were failure to identify diseases like systemic lupus erythematosus (SLE), paroxysmal and demyelinating neurological disorders. Staff in most tertiary care units will be able to recount the tale of a “functional” patient in the ward who became critically ill or died all too suddenly. Could the authors please provide a statistics for this initial misdiagnosis for the sake of comparison?

I have also some concerns regarding the broad stereotyping of patients (women, substance misusers and childhood abuse) in the context of applying the diagnosis of CMFSS. Epileptic seizures (with or without pseduoseizures) may arise from brain injury sustained as a result of childhood physical abuse. SLE is more common in women. Organic neurological diseases after substance abuse are too well recognised. It is also incorrect to assume that symptoms developing after a major psychological trauma is invariably due to CMFSS. For example, studies have repeatedly confirmed that there are changes in brain MRI and symptom severity in patients with central nervous system demyelination after stressful “life events”.

In this review, we have been provided with the history of a single illustrative case and the picture of a single patient (Charles Darwin). Darwin might or might not have had CMFSS and I shall not comment on this example, and leave this task to the competent medical historians. Referring to the “15 year segment” in the illustrative case history of a woman with CMFSS, there appears to be a few inconsistencies. I think it would be disingenuous to question the diagnosis of acute appendicitis made by a GP and confirmed by a surgeon in this woman and the normal outcome does not contribute materially to the diagnosis of CMFSS. The second life event, an unwanted pregnancy, is certainly stressful but in itself, does not constitute a feature of CMFSS unless it was a pseudopregnancy. Thus, the record of “medically unexplained symptoms” in this case is not 15, but of 10 years duration. Without questioning the diagnosis of CMFSS here, I would humbly suggest that the excellent response of pain to a very modest dose of amitriptyline is not something I have frequently seen in patients with somatising chronic pain who, on the contrary, are invariably resistant to such a simple measure, just as patients with pseudoseizures are refractory to common anti-epileptic drug therapy. In addition, based on the history provided here, I was unable to identify the features of recurrent depressive and/or personality disorders [2] that the authors highlight as important associations of CMFSS: indeed, 50 mg of amitriptyline is a grossly subtherapeutic dose for depression. I am sure that there are far more compelling examples of somatoform disorder in everyone’s experience and I wonder if the authors and the editors wanted to be deliberately provocative with this example merely because the patient had made a self-diagnosis of myalgic encephalomyelitis and had joined a self-help group to seek assistance. In any case, I would be equally interested to know the follow up in the second 15 year segment of this patient’s life (1986-2000) because surely her response is important in evaluating the efficacy of psychiatric input in CMFSS.

This commentary is already long enough and I would like to conclude with one final point. The authors have introduced an inconveniently long term and yet another new acronym (CMFSS) to describe what would be otherwise diagnosed as somatoform disorders in current clinical practice. [2] After all, the purpose of any diagnostic classification and terminology is to increase understanding of the condition for the purposes of treatment. Just as most medical and psychiatric syndromes have both organic and psychosocial aetiologies, so will most of the therapies applied. [3] I am uncertain from reading this review if the introduction of “CMFSS” offers an advancement in our current understanding or management of the somatoform disorders.

Which do you think it was? [4]

References:

1. Chaudhuri A. The role of neurodiagnostics in functional disorders. In: Zasler ND, Martelli MF(eds). Physical Medicine and Rehabilitation: State of the Art Reviews ,vol 16, No.1 (Functional Disorders). Philadelphia, Hanley & Belfus Inc. 2002; pp 63-75.

2. American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders (4th ed). Washington DC: APA, 1994.

3. Miller L. What is the true spectrum of functional disorders in rehabilitation? In: Zasler ND, Martelli MF(eds). Physical Medicine and Rehabilitation: State of the Art Reviews ,vol 16, No.1 (Functional Disorders). Philadelphia, Hanley & Belfus Inc. 2002; pp 1-20.

4. Carroll L. Through the looking glass, and what Alice found there. London: McMillan & Co., 1872.

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Free: http://apt.rcpsych.org/cgi/reprint/3/1/9.pdf

Advances in Psychiatric Treatment (1997), vol. 3, pp. 9-16

Somatoform and dissociative disorders: assessment and treatment  

David Gill and Christopher Bass

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http://apt.rcpsych.org/cgi/content/full/13/3/169

Advances in Psychiatric Treatment (2007) 13: 169-177. doi: 10.1192/apt.bp.105.001982

Fabrication and induction of illness in children: the psychopathology of abuse

Christopher Bass and Gwen Adshead

Christopher Bass is a consultant in liaison psychiatry at the John Radcliffe Hospital (Headley Way, Headington, Oxford OX3 9DU, UK. Email: christopher.bass@oxmhc-tr.nhs.uk). His main areas of research and clinical interest include patients with persistent medically unexplained physical symptoms and patients with fabricated illnesses. Gwen Adshead is a forensic psychiatrist and consultant forensic psychotherapist at Broadmoor Hospital, Crowthorne, UK. Her research interests include maltreating parents, moral reasoning in antisocial personality disorder and ethics in psychiatry. She is currently Chair of the Royal College of Psychiatrists’ Ethics Committee.

Abstract:

Fabricating or inducing illness in children (previously called Munchhausen syndrome by proxy) is a form of child abuse in which a caregiver falsifies illness in a child by fabricating or producing symptoms and presenting the child for medical care disclaiming knowledge of the cause of the problem. The behaviour has attracted considerable interest and controversy, and some have questioned its existence. In this article, we assess the prevalence of the behaviour, describing behaviours that have been reported and identified, and discuss its psychopathology. We consider the role of psychiatric expertise in the investigation of such behaviour and in the assessment of those who carry it out, based on what is known to date about their psychopathology. We also outline an approach to management with special reference to the characteristics in the mother that may allow for reunification with the child after the abuse has been established…

Full paper available in PDF and html format here: http://apt.rcpsych.org/cgi/content/full/13/3/169

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http://jrsm.rsmjournals.com/cgi/content/abstract/100/2/81

J R Soc Med. 2007 Feb;100(2):81-4. Review.

Illness related deception: social or psychiatric problem?

Christopher Bass 1  Peter W Halligan 2

1 Department of Psychological Medicine, John Radcliffe Hospital, Oxford OX3 9DU, UK E-mail: christopher.bass@obmh-tr.nhs.uk

2 School of Psychology, Cardiff University, UK

SUMMARY

In this paper we question the validity of factitious disorder as a meaningful psychiatric diagnosis. When the diagnosis is used there is often the assumption that the person engaging in the ‘deception’ is not lying in the traditional sense of being deliberately misleading. Moreover, little is known about the aetiology or psychopathology underlying factitious disorder, and the legitimacy of deception as a mental disorder has been questioned. It is argued that while illness deception may be more common that hitherto assumed, factitious disorder as a distinct type of psychiatric disorder is conceptually flawed, diagnostically impractical and clinically unhelpful and should be dropped from existing nosologies…

A tenth batch of responses to NICE CFS / ME Editorial and Review: BMJ

A tenth batch of responses to the NICE CFS/ME Editorial and Review have been published on the Rapid Response pages of the BMJ website:

EDITORIALS:
Peter White, Maurice Murphy, Jill Moss, George Armstrong, and Sir Peter Spencer Chronic fatigue syndrome or myalgic encephalomyelitis

BMJ 2007; 335: 411-412

All responses to this Editorial can be read here

13] SORRY South Australia
Dr Speedy  
(25 September 2007)
 

14] Actometers or pedometers should be used in rehabilitation studies in the field to check whether the interventions are actually leading to (substantial) increases in activity levels
Tom Kindlon  
(30 September 2007)
 
15] PSYCHIATRISTS SAY: CBT for ME does NOT work
Tessa Vinicius  
(2 October 2007)

16] ME as an inclusion of CFS
Les O SIMPSON  
(3 October 2007)

eBMJ rejects Simon Wessely’s response to NICE Editorial

Dr Simon Wessely is a GP who has ME and should not to be confused with Prof Simon Wessely who does not have ME…

…a week or two ago, Dr Wessely submitted a response to the eBMJ to the NICE CFS/ME Guideline Editorial. The Editor unaccountably rejected his letter. I have read through Dr Wessely’s response three times and I cannot see why the Editor of eBMJ Responses should have had a problem with his comments – I can see nothing in this response that might be construed as being libellous, profane or which might in some other way give the BMJ lawyers a headache – unless of course it’s because of his name – perhaps the Editor thought it was a joke.  But it isn’t a joke, because Dr Simon Wessely is a really NICE guy living with a really NASTY illness. Dr Wessely has very kindly given permission to reproduce his response on ME agenda.

(Unpublished) Rapid Response to eBMJ to NICE CFS/ME Guideline Editorial:

THE (ME) WORLD ACCORDING TO NICE:

Simon Wessely

Why is it that GET (Graded Exercise Therapy) is mentioned but has no one at Nice heard about the threshold phenomenon? When I was fit and well I could train and improve my stamina by increasing my training with a maximum of 10% a week, so I wouldn’t get injured and I completed a marathon in just over three hours. And I have kept fit my whole life, just because I like sport. The trouble with ME is that you can’t increase your stamina. My body tells me exactly what the threshold is. And the only one who can change this is my body.

I have seen some other symptoms decrease or disappear and I hope the same will happen to this threshold. Obviously I have tried the same principles I used in running to increase my threshold since I have ME, but every time I do so, things get a lot worse. At the moment I can manage to walk the enormous distance to the toilet and back. But only once an hour. If I do it twice, a one hundred percent increase, the pain is so extreme, that even a piece of paper on my legs hurts a h… of a lot. GET is a very quick way though to know if someone has ME. If they can train and improve, they don’t have ME. The trouble though is, that it is very easy to get a relapse due to GET, and get a lot worse. So GET is NOT a good idea if you really have ME. I welcome advice by an institute as NICE about a disease. However, there are too many guidelines for busy GPs to read. The problem is, I’m having time, and my brain is starting to work again, so I can have a look at these guidelines, even if this takes me days.

I’m one of those doctors with ME, and like many others I was taught that ME didn’t exist. So then to be diagnosed with ME was a bit of a shock to put it mildly. Before I fell ill, I have never been to my doctors but still, that didn’t mean that I was taken seriously. Interestingly enough one of them is a GP trainer, but even that didn’t help.

Reading your guideline all you need to have to diagnose ME is tiredness and a sore throat.

The Oxford criteria said: tiredness.
CDC/Fuduka said: tiredness plus a minimum of 4 out of 8 listed symptoms.
The Canadian and Australian Guidelines* speak of a whole list of symptoms and it seemed that finally we were separating ME from other illnesses.

*[SOUTH Australian Guidelines (2004)  http://sacfs.asn.au/download/guidelines.pdf]

And I’ll show you why this is important.

I have been confined to my bed for a long time with extreme muscle pains and cognitive dysfunction, such as difficulty with information processing. In reality this meant I could not read, use the laptop, listen to music or watch TV. As I couldn’t walk as well, I have had an interesting time, just like many others with this disease. Not to mention how GPs and others have perceived me and judged me. Now as a simple GP this sounds a bit different than tiredness and a sore throat. But I might be wrong.

You say in your guideline that “Most people with CFS/ME will improve over time and some will recover and be able to resume work and normal activities.” You also say “Offer cognitive behavioural therapy (CBT)” to help coping etc. This apparently is the best evidence based therapy as you call it. The interesting thing is, Nijmegen said in the Journal called: Psychotherapy and Psychosomatics, Vol. 76, #3, pp 171-176, in April 2007:
“After treatment, 69% of the patients no longer met the CDC criteriafor CFS.” So I would say as a simple GP, 69% was cured. Because if you meet the CDC criteria you have ME and once they are gone, you don’t have ME anymore. Their (Nijmegen) basis for CBT is: “Once the patient is convinced of the absence of a somatic cause for his symptoms, and is motivated to explore psychological consequences of his complaints (the first steps in CBT), he can benefit from CBT rapidly.”

In your guideline though, you say, advice CBT but only to cope, so it doesn’t cure. And that is exactly what the Canadians and Australians say in their guidelines; there is no cure for ME. So as a simple GP, what are we supposed to tell the patients, does CBT cure ME or not? And if it doesn’t cure, what every ME patient can tell you, then where is the evidence from all the Nijmegen articles, to use CBT in ME?

Interesting is also the fact that the WHO classifies ME as a neurological disease and I have always learned that psychosomatics was something else. But hey, wrong again. It gives a good idea though how people perceive a ME patient.

Also, if there is no cure for ME, it is even more important to make sure that we don’t label patients, who don’t have ME, as a patient with ME. For the simple fact, that we might be able to cure them. Sounds a lot better than no cure, I can assure you.

But from now on, many GPs will think, fatigue and sore throat = ME.

Another interesting thing in your guideline is the following statement: “The keys to pacing are knowing when to stop and rest by listening to and understanding one’s own body, taking a flexible approach and staying within one’s limits.” Nijmegen however states that we shouldn’t listen to our bodies because our illness beliefs are wrong. Once we overcome those, hoopla, ME gone.

If you however think that having ME is the worst part, then you are wrong. It is not only the extreme pains, the noise intolerance, for example simple noises like using cutlery to eat, or a door being shut, that makes too much noise, or a brain that doesn’t function. It is not only doctors, of the seven doctors in the practice, I have now found the one who actually thinks that someone who hasn’t been to the surgery for fifteen years, and then suddenly starts coming, might actually have a problem. Silly approach, I know.

It is also interesting to see how friends and family treat you and are calling you all sorts of names, because there is no test for ME. So we are lazy, not motivated because if we were motivated, we would have been better a long time ago. And you can think of a few other things people say. Some even do it every time they see you. Great. Is that what Nijmegen et al call the secondary gains of being ill? And I can assure you, going from sporty and very active, to a life in bed, is difficult enough to accept, let alone dealing with all those other things around ME. But if you read the comments here in the BMJ, for example those TV comments, then those are a hundred times more beneficial, than that hokus pokus CBT thing. I have tried it, as I want my normal life back, but I have never seen so much silliness being sold to me as therapy for ME. The other interesting thing about CBT is that if it works the psycho people have done a good job, and when it doesn’t it is my fault. A win win situation for Nijmegen et co. And what did we tell people with MS for decades, to name just one disease where we got it completely wrong? They had a catatonic unwillingness to move. False illness beliefs, interesting concept. But why don’t we learn from our mistakes in the past? And don’t forget, even you can get ME. Even if you think it is only for softies.

Competing interests: GP and ME patient, yes they do exist.

A ninth batch of responses to NICE CFS / ME Editorial and Review: BMJ

A ninth batch of responses to the NICE CFS/ME Editorial and Review have been published on the Rapid Response pages of the BMJ website (and Dr Speedy finally gets his response published):

EDITORIALS:
Peter White, Maurice Murphy, Jill Moss, George Armstrong, and Sir Peter Spencer Chronic fatigue syndrome or myalgic encephalomyelitis

BMJ 2007; 335: 411-412

All responses to this Editorial can be read here

11]  Re: WHO is relieved by NICE?
22 September 2007

Dr Speedy, GP, ME, Place of work: MY BED.

Many things have already been said, but I would like to take this opportunity to add a few things:

The recently finished Gibson Enquiry states that: “In Britain, there has been a clear historical bias towards research into the psychosocial explanations of CFS/ME. This is despite Parliament recognising ME as a physical illness in a Private Members Bill, the ME Sufferers Bill, in 1988.”

Furthermore it mentions that “The WHO (World Health Organisation) in Geneva holds an internationally recognised classification that ME is a neurological disease.”

And in February 2004, the then Health Minister (Lord Warner) made it very clear, in a formal written acceptance, “that the UK ACCEPTS the World Health Organisation classification of ME as a neurological disorder.”

And now if you keep that in mind and just read the NICE guidelines on ME again DEAR MR EDITOR.  More than a hundred pages and NOWHERE do they mention that ME is a NEUROLOGICAL illness.
NOWHERE AT ALL.

Now I also have a question for all the people who have written excellent responses on this page. I have started a BLOG:

http://niceguidelines.blogspot.com/

Is it alright if I would use some of your comments on my BLOG?? If not or if you have any suggestions, please let me know. My email address is on the right hand side of my Blog.  All the patients and carers for patients with ME, all the best.

Can I take this opportunity to thank all the doctors who are working hard and trying to help us. And for Mr NICE, maybe go and visit a few patients with Severe ME, I’m sure you will get a totally different view and you will understand why the Canadian and Australian guidelines* are so much better and also so much more helpful to get the diagnosis right.

*[SOUTH Australian Guidelines (2004)  http://sacfs.asn.au/download/guidelines.pdf]

Because remember, people with ME we can’t cure, but the many people who haven’t got ME, see also professor Mirza’s response on

http://www.bmj.com/cgi/eletters/335/7617/446#top, who wrote that 90% of the patients he sees with a diagnosis of ME have something else with fatigue, we can ACTUALLY TREAT. And that sounds a lot better I can assure you.

Competing interests: Bedbound GP with ME.

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12] ME and Psychiatry
23 September 2007

Michael Morris, Retired Psychiatrist Wellington, New Zealand

“The uncertainty inherent in making a diagnosis of chronic fatigue syndrome (CFS) is reflected by the variety of names (such as myalgic encephalomyelitis; ME).”

Many people who have responded, have mentioned the Canadian and Australian guidelines*; both were unfortunately not used by NICE at all.

*[SOUTH Australian Guidelines (2004)  http://sacfs.asn.au/download/guidelines.pdf]

A shame really, if you see what an excellent tick list they have produced to enable doctors to (almost) rule this uncertainty or difficulty out. I say almost, because there is no medical condition were we, as doctors, get the diagnosis right all the time.

The other thing I am a bit surprised about, is that the Editorial is written by a professor in psychiatry and the second article in the same BMJ about ME and NICE was written by another professor.

When I Google a bit, this is what I find on his site about him: “The Department of Health Sciences at the University of Leicester is a research-led department with established strengths in epidemiology, medical statistics, social science, public health, primary care, health services research and PSYCHIATRY.”

All really NICE, but why wasn’t someone like Dr Speight the Paediatrician, who has specialised in ME for more than twenty years, or Dr Chaudhuri, the neurologist, who also specialises in ME (and a few other neurological diseases) and who both acknowledge the fact that ME is a neurological disease, as Classified by the WHO, not asked instead to write about ME???

It would have given a much more balanced view if both a Neurologist and a psychiatrist would have written about this subject which is deemed by many as a controversial disease, just as we did with MS for example, when it was still called Hysteria.

Even though I, and many others, think after reading the splendid psychiatric guidelines about ME by Dr Stein, that the psychiatrist ONLY has a role in this chronic neurological disease if patients develop a depression or so alongside their ME.

Competing interests: We as psychiatrists should spend more time helping patients with a mental health problem instead of wasting valuable time and resourches on a neurological illness.

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Both these Rapid Responses were circulated via Co-Cure by Tom Kindlon, Tom added the following note to Dr Morris’s response:

[TK: With regard to the Australian guidelines, as he mentions a tick sheet he must be referring to the South Australian Guidelines which were a shortened adapted version of the Canadian Guidelines (done before the Overviews came out).

 See: http://sacfs.asn.au/download/guidelines.pdf ]

Coercion as Cure? Eileen Marshall, Margaret Williams, 21 September 2007

COERCION AS CURE?

Eileen Marshall Margaret Williams

21 September 2007

On 15th September 2007 The Times carried an article about cognitive behavioural therapy (CBT) by the newspaper’s Science Editor, Mark Henderson. Henderson noted that CBT “seeks to improve the symptoms of illness by changing patients’ attitudes, thoughts and feelings” and that this had often struck people as being “flaky”, even though courses of CBT “seem to change the way that people approach mental illnesses, allowing them to alter their behaviour in a constructive fashion”.

However, Henderson maintained that the “flaky” image of CBT was changing, because CBT “is showing promise in more unlikely fields. Several studies have shown that it can improve the prognosis for some cancers and this week, Professor Trudie Chalder, of King’s College, London, announced that it can help people with type I diabetes. Though her study has not yet been peer-reviewed or published, Professor Chalder described the results as positive”.

No information was provided about the source or authors of the studies of CBT that Henderson claimed had improved the prognosis for cancer. Continue reading “Coercion as Cure? Eileen Marshall, Margaret Williams, 21 September 2007”

‘ME guideline is unworkable’ Response to NICE guideline on ME / CFS in BMJ paper edition

The ME Association response to the NICE guideline was published in the paper edition of the BMJ on Saturday 15 September.

No other letters were selected for publication.

A report on the MEA annual medical meeting in Peterborough, which also occurred on Saturday 15th September, at which members of the NICE guideline development group gave a presentation and answered a wide range of questions on both content and implementation of the guideline will appear in the next issue of ME Essential magazine. There were so many questions from the audience that the half time tea break had to be delayed!

The MEA response to the NICE guideline can be found in the September news section of the MEA website.

Charles Shepherd
Medical Adviser

ME Association

An eighth batch of responses to NICE CFS / ME Editorial and Review: BMJ

An eighth batch of responses to the NICE CFS/ME Editorial and Review have been published on the Rapid Response pages of the BMJ website

EDITORIALS:
Peter White, Maurice Murphy, Jill Moss, George Armstrong, and Sir Peter Spencer Chronic fatigue syndrome or myalgic encephalomyelitis

BMJ 2007; 335: 411-412

All responses to this Editorial can be read here

4] Missed chance
6 September 2007

Andrew Ashley, GP, Bath
 

5] Survey data does not support their claims
7 September 2007

Annette L Barclay, too disabled to work but would like to very much, w9 1dt

6] Re: Survey data does not support their claims
11 September 2007

Giuseppe Melecci, unemployes, ME13 7EX
 

7]  PACE, NICE and FINE : Patients Perspective.
12 September 2007

R M Cox, Unable to work, Patient respondent to the NICE Consultative Process via the MEA as Stakeholder
 

8] WHO is relieved by NICE?
13 September 2007

Douglas T Fraser, Unable to work, London W6
 

PRACTICE:
R Baker and E J Shaw
Diagnosis and management of chronic fatigue syndrome or myalgic encephalomyelitis (or encephalopathy): summary of NICE guidance
BMJ 2007; 335: 446-448

All responses to this Review can be read here

24] A serious lack of evidence for NICE guidelines
10 September 2007

Ruth Nolan, Unable to work due to M.E., Ireland

A seventh batch of responses to NICE CFS / ME Editorial and Review: BMJ

A seventh batch of responses to the NICE CFS/ME Editorial and Review have been published on the Rapid Response pages of the BMJ website
 

PRACTICE:
R Baker and E J Shaw
Diagnosis and management of chronic fatigue syndrome or myalgic encephalomyelitis (or encephalopathy): summary of NICE guidance
BMJ 2007; 335: 446-448

20] CBT makes you more ill
6 September 2007

Andrew Ashley, GP Bath

21] Stakeholders comments on Draft Guidelines make for interesting reading
6 September 2007

Tom P Kindlon, Unavailable for work due to ill-health, Dublin, Rep. of Ireland

22] NICE guidelines on chronic fatigue syndrome: omission of attention medication history
7 September 2007

Christopher J Ellis, Consultant Physician, Birmingham Heartlands Hospital, B9 5SS

23] Quick guideline to ME for busy GPs
7 September 2007

Peter Saunders, GP, Perth, Australia

A sixth batch of responses to NICE CFS / ME Editorial and Review: BMJ

A sixth batch of responses to the NICE CFS/ME Editorial and Review have been published on the Rapid Response pages of the BMJ website
 

EDITORIALS:
Peter White, Maurice Murphy, Jill Moss, George Armstrong, and Sir Peter Spencer Chronic fatigue syndrome or myalgic encephalomyelitis

BMJ 2007; 335: 411-412

4]   “CFS Guidelines” Irrelevant to Actual ME Disease
4 September 2007

Helen Borel, RN,PhD, Psychoanalyst and Medical Writer 200 West 79th St., New York, New York 10024, USA

PRACTICE:
R Baker and E J Shaw
Diagnosis and management of chronic fatigue syndrome or myalgic encephalomyelitis (or encephalopathy): summary of NICE guidance
BMJ 2007; 335: 446-448
 

17]  Canadian Guidelines vs. NICE Guidelines
5 September 2007

Liz Willow, disabled 04874 (U.S.)
 

18]  Why not use the internet?
5 September 2007

BETTY BONJOUR, FAMILY PHYSICIAN, Toronto

19]  competing interests
5 September 2007

Candida Jones, Medical Journalist, I use the internet, and you?