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Editorial in British Medical Journal

Discussion in 'General ME/CFS News' started by Kati, Feb 10, 2010.

  1. Koan

    Koan Be the change.

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    Tom,

    I wonder if they received a large number of over-heated responses and simply could not wade through all to find the reasoned, well thought out responses. Or, perhaps, they knew about the just released XMRV research and decided not to publish anything which referenced, too strongly or at all, XMRV.

    If the former, perhaps part of our collective effort, very much in line with what you have already been doing, should be to organize responses to these developments so that those who can most effectively respond do respond and those who are not in a good position to, don't. For instance, I know I am not capable to composing anything which would be of interest to the editors or readers of the BMJ so I did not reply.

    If this forum functions, as it seems it can, as a global meeting place for PWME, this kind of organized response should be not only very doable but very effective.

    I know you have been guiding people in these matters for a very long time. How can we on the forum help you to carry on this important effort?
  2. Koan

    Koan Be the change.

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    Tom, We were posting at the same time so I had not yet read yours.
  3. Min

    Min Senior Member

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    The original article is in today's Nursing Times, although not yet on line. If anyone wants to write a letter to the editor for publication the contacts details are here:

    http://www.nursingtimes.net/contact-us/
  4. Dolphin

    Dolphin Senior Member

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    13 more Rapid Responses posted - some people had to amend theirs to get it posted

    [Lots more Rapid Responses published now. The 5th one has some information on the 5 government-subsidized "CFS Reference Centers" in Belgium. 9th one is from Dr Vance Spence, Chairman, ME Research UK. 2nd last one is about person made worse by CBT/GET at Kings!]

    At least a couple of people found their post didn't go up, so they E-mailed letter's editor Sharon Davies if there was a problem. They had to alter theirs before they would be posted.

    http://www.bmj.com/cgi/eletters/340/feb11_1/c738

  5. Dolphin

    Dolphin Senior Member

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    Re: Article in Nursing Times

    Hi Min, Just wondering whether you or your source saw it directly or it is based on the AfME media bulletin?
    I think I'll post a message on Co-Cure but could would feel a little more secure if I had "two sources".
  6. The Minkey

    The Minkey

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    An unpublished yet very informative response to the BMJ article on CFS

    This was posted on MEActionUK earlier - an excellent response imo which doesn't appear to have been published.

    Permission to Repost

    http://www.meactionuk.org.uk/reasons-for-patient-disenchantment.htm

    Submitted to BMJ.com 15 Feb 2010 12.47 GMT, as a Rapid Response to:

    EDITORIALS:
    Alastair M Santhouse, Matthew Hotopf, and Anthony S David

    Chronic fatigue syndrome
    BMJ 2010; 340: c738

    ----O----

    Reasons for Patient Disenchantment.

    Horace A Reid,

    Ill-Health Retired

    Co. Down


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

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

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

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

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

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

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

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

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


    Horace Reid.

    References:

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

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

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

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

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

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

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

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

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

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

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

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

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


    Competing interests: Patient with ME/CFS

    ----O----

    Read more rapid responses on the eBMJ website

    http://www.bmj.com/cgi/eletters/340/feb11_1/c738#231202
  7. Gerwyn

    Gerwyn Guest

    They actually published my response today
  8. The Minkey

    The Minkey

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    Great news - when did you submit it?
  9. Gerwyn

    Gerwyn Guest

    on the seventeenth I think
  10. Dolphin

    Dolphin Senior Member

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    BMJ editorial in Irish Medical Times

    http://www.imt.ie/clinical/infections-immunology/defeatism-undermines-treatment.html

    The Irish Medical Times is a free weekly newspaper sent to Irish doctors.
    People can comment online.

    If you want to send a letter, send it to: editor@imt.ie.
    Letters start, "Dear Editor". Don't forget to put your name and contact number (although most times they won't ring).
    400 words is about the max words I think but probably as you decrease from that, the chances it will be published will increase, especially if you're not a doctor and don't have any fancy title.
  11. Dolphin

    Dolphin Senior Member

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    I sent this in to the Irish Medical Times.

    It's similar to my BMJ e-letter except that I changed the last two paragraphs to add in a little on pacing. I couldn't say as much as I wanted on it of course as well trying to keep it tight.

    Tom

    Dear Editor,

    You recently highlighted some comments on Chronic Fatigue Syndrome (CFS)/Myalgic Encephalomyelitis(ME) from a British Medical Journal (BMJ) Editorial ("Defeatism undermines treatment of chronic fatigue syndrome", February 26).

    Santhouse and colleagues claim that treatments such as cognitive behavioural therapy (CBT) and graded exercise therapy (GET) "have been shown to work" in CFS. However, what the literature actually shows is that while such therapies can have an effect, this is not necessarily the same thing as "working": a meta-analysis calculated the average Cohen's d effect size across various CBT and GET studies to be 0.48, which would generally be described as a small-moderate effect size (Malouff, 2008).

    A recent review of three Dutch CBT studies found that, while patients reported lowered fatigue, their activity levels did not improve and remained low, calling into question claims that CBT is an effective rehabilitative strategy (Wiborg, 2010).

    Systematic reviews tend to ignore "real world" data. An audit of 5 Belgian rehabilitation clinics, where the treatments offered were CBT and GET, found that while improvements were recorded in various subjective outcome measures, there was negligible change in the results from the exercise test and the average number of hours in paid employment decreased at the end and at follow-up. This was unlikely to be due to under- treatment, as an average of 41 sessions were undertaken.

    The authors give the impression that nothing can be done if CBT and/or GET are not recommended. However a NIH-funded study in the US (Jason, 2007) found that a management program based on the pacing of activities showed superior results to the arms of the trial involving CBT and GET. High rates of adverse reactions have also been reported with graded exercise programs (Kindlon & Goudsmit, 2010), while pacing has a good safety record.

    ME/CFS is increasingly being recognised as a heterogeneous condition.
    Hopefully in the coming years, research will shed more light on the subject for clinicians and patients alike.
  12. Dolphin

    Dolphin Senior Member

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    A slightly shortened version of this was published http://www.imt.ie/opinion/2010/03/fatigue_research_needed.html .
    Thanks to anybody who wrote in
  13. Gerwyn

    Gerwyn Guest

    This was mine
    Psychologist
    SA16 OAZ,
    Stephanie Fulton

    Send response to journal:
    Re: CBT The Mythology



    I refer to the article "Air of defeatism exists within the medical profession that chronic fatigue syndrome can be treated" This article trivialises the severity of the illness and contains a number of factual inaccuracies.

    NICE is selectively quoted.Nice actually point out that CFS/ME is a very serious real illness of yet unknown origin and can be more disabling as multiple sclerosis or late stage aids---There is no known cure or effective treatment.

    This should have been quoted.

    NICE specifically make the point that CBT is not a treatment for the symptoms but an aid to help patients come to terms with their illness. Is this what is meant by" working"?

    CBT has never shown any objective benefit

    Some studies, using self reporting, have shown a subjective benefit on fatigue i.e as assessed by the patient, but no effect at all on activity levels when measured scientifically.

    The confidence intervals in these studies are so wide as to make extrapolation into a general ME/CFS population impossible.The studies are clearly underpowered.

    Many sufferers take their lives because living with the symptoms is unbearable These symptoms cannot be treated

    There is no robust scientific evidence to support GET although there was a recent heart attack!

    Would any pharmaceutical product obtain a product licence based on patient self evaluation----or with the confidence interval values associated with CBT studies.The answer is a resounding No!

    Why therefore are sufferers of ME/CFS classified by the WHO as a neurological disorder only offered CBT

    Why were NICE instructed to ignore all the biomedical evidence when draughting their guidelines

    Yours Sincerely,

    G J Morris BSc(Psych) LLB(Lond) Dip Law

    Competing interests: None declared
  14. Orla

    Orla Senior Member

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    What I had sent in

    There is an alternative to CBT and GET.

    Dear Editor,

    I was concerned on reading the article Defeatism undermines treatment of chronic fatigue syndrome (IMT, February 26), that many doctors would get the impression that Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET) were the best, and even only, options for patients with ME/CFS. But a close reading of the literature could lead one to a very different conclusion.

    A study by O'Dowd (2006) showed that CBT was no better than usual medical care, or education and support, in improving physical function or employment status. The British Psychological Society have pointed out (2006) that "CBT is no more effective than counseling" and that "there is no evidence that GET (with or without CBT) actually increases activity levels. Where objective measures have been employed, the increments in activity levels have been negligible and no greater than that seen in controls".

    Frequent reports of adverse reactions to CBT and GET should also be considered. A survey (n=2338) conducted for the UK Chief Medical Officer's working group on ME/CFS found that CBT and GET were rated the worst of all treatments surveyed: 50% of patients reported feeling worse as a result of a GET regime, while 93% reported that CBT was either ineffective or made them worse. In contrast, Pacing and Rest were considered the most helpful strategies (89% and 91% finding them helpful respectively). There is also evidence for Pacing in two recently published controlled studies (Goudsmit 2009; Jason 2007) the latter found that Pacing came out better than interventions based on CBT and GET.

    Symptomatic relief can also be very important to patients. In the aforementioned survey, 61% of patients found drug medication for pain helpful and 67% found medication for sleep helpful.

    Biomedical research is slowly helping to reveal the underlying pathophysiology of ME/CFS. In the meantime, many questions remain about what are the safest and most effective treatments for patients. Given the lack of solid objective evidence for CBT and GET, and the accounts of adverse reactions, I feel that pacing of activities (where the patient can increase activity if they improve), is a more responsible management strategy to recommend at this time.

    Yours Sincerely,

    Orla Ni Chomhrai,

    Galway ME/CFS Support Group Co-ordinator.
  15. Dolphin

    Dolphin Senior Member

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    Thanks for posting that in Gerwyn - I'm sure having good letters like that helped put the pressure on them to include at least one.

    If you or anyone wants to post their letter at: http://www.imt.ie/clinical/infections-immunology/defeatism-undermines-treatment.html , it'd be good.

    Bye,

    Tom
  16. Dolphin

    Dolphin Senior Member

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    Well done to Orla, Dr. John Greensmith and everyone else who wrote in e.g. Gerwyn

    After my letter last week, the Irish Medical Times published two more this week!

    Im sure the various letters they got helped so thanks to everyone like Gerwyn who wrote in.

    Orla didnt spell out ME in the letter she submitted so they spelt it for her!

    ----------------------------

  17. Dolphin

    Dolphin Senior Member

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    Congratulations Gerwyn - your letter was published in the Irish Medical Times

    Congratulations and thanks, Gerwyn - your letter was published in the Irish Medical Times today.

  18. Jerry S

    Jerry S Senior Member

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    Congratulations, Gerwyn! Well said, indeed!! :Sign Good Job: :thumbsup:

    Best wishes,
    Jerry
  19. Min

    Min Senior Member

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    brilliant letter, well done!
  20. Orla

    Orla Senior Member

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    Thanks Gerwyn,

    Orla

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