Editorial in British Medical Journal

MEKoan

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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?
 

Dolphin

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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

Chronic Fatigue Syndrome
John K Johnson (15 February 2010)

Determined individual with CFS/ME
Julia A. E. Glenn (15 February 2010)

What can they offer to counter defeatism?
Annette Barclay (15 February 2010)

Re: Welcomed common sense and clarity
Catherine N Bartholomew (15 February 2010)

The Belgian experiment with CBT and GET
Kathelijne A Hugaerts (16 February 2010)

It is more than defeatism which greets patients with ME
Stephanie E Munn (16 February 2010)

Chronic Fatigue Syndrome, mitochondrial dysfunction and toxic metals
Ellen CG Grant (16 February 2010)

triumphalism not defeatism
Irene Thorpe (16 February 2010)

Not the Answer to the Biomedical Enigma
Dr Vance Spence (16 February 2010)

Funds for ME/CFS
Susan F Goodall (16 February 2010)

Diagnosis: Fact or Fiction
Hugh Mann (17 February 2010)

CBT and GET taking up valuable funds
Theresa L Heath (17 February 2010)

What is chronic fatigue and what is M.E.?
Duncan Cox (17 February 2010)
 

Dolphin

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Re: Article in Nursing Times

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/
Hi Min, Just wondering whether you or your source saw it directly or it is based on the AfME media bulletin?
---------
http://www.afme.org.uk/news.asp?newsid=754

Daily Press Summary 17/02/10
17 February 2010

Defeatist attitude

Defeatism from doctors about CFS is undermining evidence that it can be treated says an article published in this months British Medical Journal.
Nursing Times, p 8-9
16/02/10
-------
I think I'll post a message on Co-Cure but could would feel a little more secure if I had "two sources".
 
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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
 
G

Gerwyn

Guest
Back to normal again. Four comments went up there now (they usually put up comments once per day and had already put comments up today so I thought it was it for today)
They actually published my response today
 

Dolphin

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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.
 

Dolphin

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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.
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.
 

Dolphin

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I sent this in to the Irish Medical Times.

I sent in this, fwiw.

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.
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
 
G

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
 

Orla

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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.
 

Dolphin

Senior Member
Messages
17,556
Likes
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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
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
 

Dolphin

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

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.
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!

http://www.imt.ie/opinion/2010/03/using_pacing_as_alternative_to.html

Using pacing as alternative to CBT

Dear Editor,

I was concerned on reading the article `Defeatism undermines treatment of chronic fatigue syndrome' in the February 26 issue of Irish Medical Times (www.imt.ie/clinical/infections-immunology/defeatism-undermines-treatment.html), which said 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 myalgic encephalopathy/chronic fatigue syndrome (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 has pointed out (2006) that `CBT is no more effective than counselling' 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 per cent of patients reported feeling worse as a result of a GET regime, while 93 per cent reported that CBT was either ineffective or made them worse.

In contrast, pacing of activities (where the patient can increase activity if they improve) and rest were considered the most helpful strategies (89 per cent and 91 per cent 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 per cent of patients found drug medication for pain helpful and 67 per cent 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 is a more responsible management strategy to recommend at this time.

Orla N Chomhra,
Galway ME/CFS Support Group Co-ordinator.
----------------------------

http://www.imt.ie/opinion/2010/03/some_psychiatrists_could_use_a.html

Some psychiatrists could use a degree in common sense

Dear Editor,

It is hardly surprising that psychiatrists such as Dr Alastair Santhouse hold the view that 'treatments such as cognitive behavioural therapy and graded exercise therapy have also been shown to work in chronic fatigue syndrome/myalgic encephalopathy (CFS/ME) and are recommended by the National Institute for Health and Clinical Excellence' and that, therefore, 'the alternative to treatment is often no treatment at all and this can have a disastrous effect on the patient' ('Defeatism undermines treatment of chronic fatigue syndrome' - IMT, February 26, www.imt.ie/clinical/infections-immunology/defeatism-undermines-treatment.html ), because the majority of those who recommended and also practise them are qualified in psychiatry.

In fact, the very latest research review (Twisk and Maes, September 2009) confirms the findings of every previous study - including those of the same people advocating and practising these treatments - that CBT/GET is not only ineffective but potentially harmful for many patients with ME. I think you would only have to be qualified in common sense, therefore, to conclude that it would be preferable to have no treatment than one which does you no good (CBT), or one that may make you worse (GET).

In the meantime, the best care that a person with ME can have is from a sympathetic GP offering support and treatment for symptom relief until a safe, effective treatment is available.

Dr John H Greensmith,
MEFreeForAll.org, Bristol, UK
 

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.

http://www.imt.ie/opinion/2010/04/severity_of_chronic_fatigue_sy.html

Severity of chronic fatigue syndrome/ME was trivialised by recent article

Dear Editor,

I refer to Defeatism undermines the treatment of chronic fatigue syndrome (26/2/10, www.imt.ie/clinical/infections-immunology/defeatism-undermines-treatment.html). This article trivialises the severity of the illness and contains a number of factual inaccuracies.

NICE is selectively referenced. It actually points out that CFS/ME is a very serious real illness of yet unknown origin and can be more disabling than multiple sclerosis or late-stage AIDS. There is no known cure or effective treatment.

In the words of NICE: The Guideline Development Group 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 p252). 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.

There is no robust scientific evidence to support GET although there was a recent heart attack! The known and frequent adverse events associated with the GET/CBT combination, have never been scientifically evaluated.

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

G J Morris, BSc(Psych) LLB Dip Law