ill cooper,
Non-militant ME campaigner who does not have ME
Teacher cv214hl
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Re: Biomedical Research not Wastepaper basket diagnoses
Patients and their families are 'fatigued' with the medical profession's sloppy attitude towards diseases which the medical profession call 'syndromes'. Instead of admitting that these conditions are, as yet, not understood, the medical profession have invented hypotheses about mind/body manifestations which can only be treated by correction of thinking on the part of the patient.
Cognitive Behavioural Therapy is promoted to 'help patients manage their symptoms' and to cure 'abnormal illness beliefs'. Graded Exercise Therapy is aimed at reversing 'de- conditioning'.
The best help a medic can give a patient is to respect that patient's intellect and admit that not everything is understood about the human body.
Instead, we seem to have a group of very powerful psychiatrists who adopted the Royal Free Disease in the late 60s, ignored all the evidence of physical symptoms, and have presented it ever since as a form of hysteria.
As a result, we have patients who are severely physically ill who are choosing suicide rather than to further endure the cruelty doled out to them by the medical profession and the rest of society.
I do not include all medical professionals in the above accusation but I do include many of them.
I urge all medical professionals to look at the already existing evidence which shows immune, endocrine and neurological abnormalities.
I urge you to support the MRC initiative, led by Professor Stephen Holgate, to do biomedical research to establish the underlying causes of this range of 'syndromes' so that these patients can receive suitable care.
Competing interests: None declared
Do CBT and GET really work for Chronic Fatigue Syndrome? 12 February 2010
Tom Kindlon,
Information Officer (voluntary position)
Irish ME/CFS Association
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Re: Do CBT and GET really work for Chronic Fatigue Syndrome?
Santhouse and colleagues claim that treatments such as cognitive behavioural therapy (CBT) and graded exercise therapy (GET) “have been shown to work” in Chronic Fatigue Syndrome (CFS)/Myalgic Encephalomyelitis (ME)(1). However, what the literature actually shows is that such therapies have an effect, which 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 effect size(2).
A recent review of three Dutch CBT studies found that while patients’ fatigue did improve, their activity levels did not and remained low, calling into question claims that CBT is an effective rehabilitative strategy(3).
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(4). This was unlikely to be due to under- treatment, as an average of 41 sessions were undertaken.
Given all this data, and the high rates of adverse reactions from GET that have reported in surveys(5), patients and their clinicians are entitled to hope that in the future a greater range of interventions will be available.
Tom Kindlon
References:
1. Santhouse AM, Hotopf M, David AS. Chronic Fatigue Syndrome. BMJ 2010;340:c738
2. Malouff JM, Thorsteinsson EB, Rooke SE, Bhullar N, Schutte NS. Efficacy of cognitive behavioral therapy for chronic fatigue syndrome: a meta-analysis. Clin Psychol Rev. 2008 Jun;28(5):736-45.
3. Wiborg JF, Knoop H, Stulemeijer, M, Prins JB, Bleijenberg, G. How does cognitive behaviour therapy reduce fatigue in patients with chronic fatigue syndrome? The role of physical activity. Psychol Med, 2010 Jan 5:1 -7. [Epub ahead of print]
4. Rapport d'valuation (2002–2004) portant sur l'excution des conventions de rducation entre le Comit de l'assurance soins de sant (INAMI) et les Centres de rfrence pour le Syndrome de fatigue chronique (SFC) (2006)
http://www.inami.fgov.be/care/fr/revalidatie/general- information/studies/study-sfc-cvs/pdf/rapport.pdf (Date last accessed: 11 February 2010).
5. Kindlon T, Goudsmit EM. Graded exercise for Chronic Fatigue Syndrome: Too soon to dismiss reports of adverse reactions. J Rehabil Med. 2010 Feb;42(2):184-6.
Competing interests: None declared
Re: Why do doctors refuse to believe patients? 12 February 2010
Ellen Goudsmit,
Registered Psychologist (Health)
London TW11 9QX
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Re: Re: Why do doctors refuse to believe patients?
Re my post 11th February 2010.
I'd like to apologise to Dr. Santhouse for misspelling his name after the first citation, which was correct. I also wish to note that reference 1 in the text relates to reference 2 in the list.
Ellen Goudsmit PhD C.Psychol. FBPsS
Competing interests: None declared
Defeatism and Chronic Fatigue 12 February 2010
Alastair C Young,
Neurologist
Bolton BL1 4QR
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Re: Defeatism and Chronic Fatigue
Santhouse and colleagues comment on the defeatism of clinicians with regard to the chronic fatigue syndrome.Much of the blame for this reaction is the bullying and badgering from a pwerful lobby,predominantly lay but partly medical, which will not accept any role for psychological factors in the cause of this disorder.
If there is a physical cause then there is certainly no standard medical treatment available at present.To encourage the unfortunate victims to pursue the purely physical approach is to deny them the benefits of the treatments outlined by Santhouse and his colleagues.
Competing interests: None declared
More light needed 12 February 2010
Neil H Riley,
Chairman of The ME Association
7, Apollo Office Court, Gawcott, Buckingham MK184DF
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Re: More light needed
As both a patient with ME/CFS and the Chairman of a National Charity whose purpose is to inform, fund research and support those with the illness I have found little defeatism amongst the medical professionals I have met. There are those who are perplexed; those who accept the chronicity; those who believe they know a treatment that will help.
What is missing in this debate is the need to examine more closely the huge range of patients lumped together under the CFS/ME diagnosis. I have attended many support groups for this illness and the variety of presentations of symptoms is wide. Some clearly need active psychiatric help; others counselling; some are in recovery. But there is a core of chronically unwell members who are not depressed, whose illness began with a severe viral infection and who have not recovered. Despite the NICE Guideline recommended treatments of CBT and GET, those patients remain ill and we simply do not know why.
Until money is spent and researchers encouraged to look more closely at that group then this illness will continue to generate much heat but painfully little light. I and many thousands of others like me have an illness that limits our lives hugely but we do not have an air of defeatism. We have the intelligence, the drive and the belief that medical science will eventually find out why we are so ill.
Neil Riley
Chairman of the ME Association Buckingham. MK18 4DF
Competing interests: None declared
Severely affected - severely neglected 13 February 2010
Dr Charles B Shepherd,
Hon Medical Adviser
The ME Association, 7 Apollo Office Court, Radclive Road, Gawcott, Bucks MK18 4DF
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Re: Severely affected - severely neglected
Santhouse et al (1) are correct to say that therapeutic defeatism is not the answer to ME/CFS and that suicidal intentions must always be taken seriously. However, they make a number of conclusions and observations that are over-simplistic, premature or inaccurate.
First, the media have, quite rightly, used the tragic case of Lynn Gilderdale to highlight the fact that severe ME/CFS exists and that there is a desperate need for biomedical research into the underlying cause. But the media coverage did not imply that ME/CFS is a 'commonly fatal' condition, and it was premature of the authors to then go on and conclude - without the benefit of robust epidemiological data - that mortality is not increased.
Second, a considerable amount of accumuating patient evidence (2) indicates that a significant proportion of people with ME/CFS find that the two behavioural treatments being recommended - cognitive behaviour therapy (CBT) and graded exercise therapy (GET) - are either ineffective (ie CBT) or harmful (ie GET). And the only research so far to investigate potential risk factors which are involved in the development of severe ME/CFS (3) has concluded that there is no evidence to implicate personality or neurotic traits. It is therefore disingenuous to claim that the use of these two behaviour-based therapies, in a group of patients who cannot normally travel to hospital to access them, is going to produce a 'dramatic recovery'.
Third, having dealt with the families of a number of people with ME/CFS who have committed suicide in recent years, the reasons for doing so are often related to a combination of factors which predominently involve lack of medical care and social support, failure to control key symptoms, and inadequate financial help.. While depression may be a factor in some cases it is not always present.
People with severe ME/CFS require multidisciplinary services in both a domiciliary and accesible hospital based setting that matches their complex individual needs. Having strongly criticised the current lack of care that is available, we question whether the NHS trusts the authors work for are in fact putting words into action and supplying domiciliary and in patient facilities for their severely affected ME/CFS patients.
References
1 Santhouse AM, Hotopf M, David AJ. Chronic fatigue syndrome. BMJ 2010; 340: 738 (13 February)
2 Report of the CFS/ME Working Group. Department of Health; January 2002.
http://www.dh.gov.uk/dr_consum_dh/g...@dh/@en/documents/digitalasset/dh_4059506.pdf
3 Pheby D and Saffron L. Risk factors for severe ME/CFS. Biology and Medicine 2009; 1: 50 -74.
http://biolmedonline.com/Articles/vol1_4_50- 74.pdf
Competing interests: Medical Adviser to an ME/CFS patient support and research funding charity. Member of MRC Expert Group on ME/CFS research.
CBT/GET is ineffective and potentially harmful. ME/CFS patients seem to die considerably younger. 13 February 2010
Frank N.M. Twisk,
Patient and literature researcher
Limmen, the Netherlands
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Re: CBT/GET is ineffective and potentially harmful. ME/CFS patients seem to die considerably younger.
As has been established by the Bagnall et al. (1) and the Price et al. (2), the solution proposed by Santhouse (3) cognitive behavioural therapy (CBT)/graded exercise therapy (GET) reduced "fatigue severity" in 40% of chronic fatigued people, in contrast with 26% in usual care.
Taking into consideration the placebo effect, the fact that a reduction in "fatigue" is not reflected by objective improvement (4, 5), the fact that the evidence base for CBT and GET is almost non-existent, etc. one must conclude that CBT and GET is not effective.
Moreover, as established by large patient surveys, e.g. (6, 7), and by clinical practice (5), CBT/GET has a negative effect on the symptomology of many ME/CFS patients (pain, muscle weakness, neurocognitive impairment etc.)
This can be explained by the fact that exertion, and thus GET, intensifies the pre-existing pathophysiology: inflammation, immune dysfunction, immunosuppression, (persistent) infections, oxidative and nitrosative stress and their sequels, e.g. mitochondrial damage/dysfunction and a disturbed circulation (8, 9).
All in all, CBT/GET is a non-evidenced based therapy and even potentially harmful for many ME/CFS patients (10).
Santhouse also asserts incorrectly that 'the greatest risk to life is likely to be suicide' and 'this is often linked to depression that can be effectively treated'.
A study into the causes of death by a Jason (11) established that 20% of the patients had died from cancer, 20% had died as the consequence of heart failure, and 20% as a result of suicide.
The mean age of those who died from cancer and suicide was 47.8 and 39.3 years, respectively, which is 24 years younger than those who died from cancer and suicide in the general population.
The pathological abnormalities established in ME/CFS repeatedly plausibly explain an increased risk for cancer (12)and heart failure (13).
Certainly it is warranted to treat depression in ME/CFS.
However, succesfully treating depression, e.g. by antidepressants, has no effect on characteristic physical and cognitive ME/CVS symptoms (14, 15, 16).
In conclusion, the comments made by Santhouse do not seem to be very appropriate.
Ironically, the CBT/GET mantra by Santhouse and colleagues and denial of serious biological aberrations is exactly the reason why many patients feel that 'the medical profession has given up to them'.
It is about time the medical profession takes this devastating illness seriously by exploring the biological abnormalities in depth and developing effective therapies aimed at these aberrations.
So the death of Lynn Gilderdale and many others will not be in vain.
1. Bagnall A, Hempel S, Chambers D, Orton V, Forbes C. The Treatment and Management of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis in Adults and Children. Centre for Reviews and Dissemination (CRD), University of York. 2007; CRD Report 35:161.
2. Price JR, Mitchell E, Tidy E, Hunot V. Cognitive behaviour therapy for chronic fatigue syndrome in adults. Cochrane Database Syst Rev. 2008 Jul 16;(3):CD001027.
3. Santhouse AM, Hotopf M, David AS. Chronic fatigue syndrome. BMJ. 11 February 2010. doi:10.1136/bmj.c738.
4. Wiborg JF, Knoop H, Stulemeijer M, Prins JB, Bleijenberg G. How does cognitive behaviour therapy reduce fatigue in patients with chronic fatigue syndrome? The role of physical activity. Psychol Med. 2010 Jan 5:1 -7.
5. Council of approval with regards to rehabilitation contracts with CFS reference [Akkoordraad in het kader van de revalidatieovereenkomsten inzake ten laste neming door Referentiecentra van patinten lijdend aan het Chronisch vermoeidheidssyndroom] [Dutch]. Evaluation Report (2002- 2004) with respect to Rehabilitation Contracts between the RIZIV and the CFS Reference Centers [Evaluation Report 2002-2004 with respect to rehabilitation contracts between the RIZIV and the CFS Reference Centers] [Dutch). 2006, July.
6. Action for M.E./AfME. Scotland M.E./CFS Scoping Exercise Report. 2007.
7. Bjrkum T, Wang CE, Waterloo K. [Patients' experience with treatment of chronic fatigue syndrome] [Article in Norwegian]. Tidsskr Nor Laegeforen. 2009 Jun 11;129(12):1214-6.
8. Kerr JR, Petty R, Burke B, Gough J, Fear D, Sinclair LI, Mattey DL, Richards SC, Montgomery J, Baldwin DA, et al. Gene expression subtypes in patients with chronic fatigue syndrome/myalgic encephalomyelitis. J Infect Dis. 2008 Apr 15;197(8):1171-1184.
9. Gow JW, Hagan S, Herzyk P, Cannon C, Behan PO, Chaudhuri A. A gene signature for post-infectious chronic fatigue syndrome. BMC Medical Genomics 2009, 2:38. doi:10.1186/1755-8794-2-38.
10. Twisk FNM, Maes M. A review on cognitive behavorial therapy (CBT) and graded exercise therapy (GET) in myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS): CBT/GET is not only ineffective and not evidence-based, but also potentially harmful for many patients with ME/CFS. Neuro Endocrinol Lett. 2009 Aug 26;30(3):284-299.
11. Jason LA, Corradi K, Gress S, Williams S, Torres-Harding S (2006). Causes of death among patients with chronic fatigue syndrome. Health care for women international. 2006; 27 (7): 615–26. doi:10.1080/07399330600803766.
12. Meeus M, Mistiaen W, Lambrecht L, Nijs J. Immunological similarities between cancer and chronic fatigue syndrome: the common link to fatigue? Anticancer Res. 2009 Nov;29(11):4717-26.
13. Maes M, Twisk FNM. Why myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) may kill you: disorders in the inflammatory and oxidative and nitrosative stress (IO&NS) pathways may explain cardiovascular disorders in ME/CFS. Neuro Endocrinol Lett. 2009;30(6):677- 93.
14. Vercoulen JH, Swanink CM, Zitman FG, Vreden SG, Hoofs MP, Fennis JF, Galama JM, van der Meer JW, Bleijenberg G. Randomised, double-blind, placebo-controlled study of fluoxetine in chronic fatigue syndrome. Lancet. 1996 Mar 30;347(9005):858-61.
15. White PD, Cleary KJ. An open study of the efficacy and adverse effects of moclobemide in patients with the chronic fatigue syndrome. Int Clin Psychopharmacol. 1997 Jan;12(1):47-52.
16. Wearden AJ, Morriss RK, Mullis R, Strickland PL, Pearson DJ, Appleby L, Campbell IT, Morris JA. Randomised, double-blind, placebo- controlled treatment trial of fluoxetine and graded exercise for chronic fatigue syndrome. Br J Psychiatry. 1998 Jun;172:485-90.
Competing interests: None declared
There's none so blind as those who will not see 13 February 2010
Louise E Ellis,
Chair of the Manchester M.E. Society
M24 1JX
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Re: There's none so blind as those who will not see
When is the medical profession in the UK going to wake up to the fact that CBT and GET are not effective treatments for M.E? They may be effective for some patients whose fatigue is of a psychiatric origin. However, as patient surveys repeatedly show, CBT and GET are either of no use or result in worsening symptoms for the majority of M.E. patients.
M.S. was proven not to be ‘hysterical paralysis’. How long do we have to wait before the medical profession admits that M.E. is not a treatable psychosocial illness?
What M.E. patients would like to see is biological research into the condition. Repetition of the erroneous claim that CBT and GET are the answer to the condition is only making the situation worse for us.
Competing interests: None declared
Using the correct tool for the right job 13 February 2010
Kelly Latta,
medical writer
27601
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Re: Using the correct tool for the right job
It is unfortunate that neither the editorial staff or Drs. Santhouse, Hotopf, and David have anything new to add in terms of relevant information.
Like talk therapy, CBT has also been shown to help some patients in some cases with other organic diseases as well as those who may not even have a disease. It is not the secret they seem to think it is. But neither is it the only tool in the shed.
Unfortunately CFS has come to be an umbrella term used to describe anything from people who are merely tired and weary all the way to severely sick patients with an organic brain disease (CFS WHO ICD-10 G93.3 Vol.3 pg 528).
It is illogical to assume that any one treatment is going to meet the needs of such a heterogenous group.
Nor do the authors mention that research with anti-virals and immune system modulators show that in appropriate subgroups these may be the most effective treatments. Nor do they mention pacing.
As to causes of death in CFS, there is not much research, but the research that exists shows that patients are most likely to die of cancer, heart failure and suicide decades sooner than their contemporaries in the general population. (Patients with AIDS don't die of AIDS either, but they do die.)
As for suicide, it is always unfortunate when stigmatization by the medical community has such a negative iatrogenic effect.
Kogelnik AM, Loomis K, Hoegh-Petersen M, Rosso F, Hischier C, Montoya JG. Use of valganciclovir in patients with elevated antibody titers against Human Herpesvirus-6 (HHV-6) and Epstein-Barr Virus (EBV) who were experiencing central nervous system dysfunction including long-standing fatigue. J Clin Virol. 2006 Dec;37 Suppl 1:S33-8.
Propsner NM.Fatigue that doesn't go away. N J Med. 1999 Jun;96(6):29- 31.
Suhadolnik RJ, Reichenbach NL, Hitzges P, Adelson ME, Peterson DL, Cheney P, Salvato P, Thompson C, Loveless M, Mller WE, et al.Changes in the 2-5A synthetase/RNase L antiviral pathway in a controlled clinical trial with poly(I)-poly(C12U) in chronic fatigue syndrome. In Vivo. 1994 Jul-Aug;8(4):599-604.
Fluge , Mella O. Clinical impact of B-cell depletion with the anti- CD20 antibody rituximab in chronic fatigue syndrome: a preliminary case series. BMC Neurol. 2009 Jul 1;9:28.
Staines DR, Brenu EW, Marshall-Gradisnik S. Postulated vasoactive neuropeptide immunopathology affecting the blood-brain/blood-spinal barrier in certain neuropsychiatric fatigue-related conditions: A role for phosphodiesterase inhibitors in treatment? Neuropsychiatr Dis Treat. 2009;5:81-9. Epub 2009 Apr 8.
Jason LA, Corradi K, Gess S, Williams S, Torres-Harding S. Causes of Death Among Patients With Chronic Fatigue Syndrome. Health Care for Women International, 27:615–626, 2006
Levine, P. H., Atherton, M., Fears, T., & Hoover, R. (1994). An approach to studies of cancer subsequent to clusters of chronic fatigue syndrome: Use of data from the Nevada State Cancer Registry. Clinical Infectious Diseases, 18(Suppl. 1),S49–S53.
Peckerman, A., LaManca, J. J., Dahl, K. A., Chemitiganti, R., Qureishi, B., & Natelson, B. H. (2003). Abnormal impedance cardiography predicts symptom severity in chronic fatigue syndrome. The American Journal of the Medical Sciences, 326(2),55–60.
Green, J., Romei, J., & Natelson, B. J. (1999). Stigma and chronic fatigue syndrome. Journal of Chronic Fatigue Syndrome, 5, 63–75.
Competing interests: None declared
No room for complacency 13 February 2010
Derek FH Pheby,
Visiting Professor of Epidemiology, and Project Coordinator, National ME/CFS Observatory
Faculty of Society and Health, Bucks. New University, 106, Oxford Road, Uxbridge, UB8 1NA
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Re: No room for complacency
Santhouse et al (1) quoted with approval Mr. Justice Simon’s judgment in the judicial review of the NICE guidelines on CFS/ME, that there is "... a perception that this is an area of medicine where contrary views are not to be voiced, and where scientific enquiry is to be limited, [that] is damaging to science and harmful to patients" (2). They will therefore not object if I venture an opinion contrary to theirs.
They cite a recent systematic review (3) as evidence of the effectiveness of behavioural interventions such as cognitive behaviour therapy and graded exercise in CFS/ME, yet that same review states: “The protocols for many clinical studies require patients to attend a clinic for treatment and/or assessment. These conditions may exclude people severely affected with CFS/ME from taking part and hence bias the sample towards those with less severe symptoms.” Indeed, the only evidence cited by Santhouse et al that such interventions may benefit the severely affected is an uncontrolled pilot study of only nineteen patients, published more than a decade ago (4).
There is no evidence at all that such interventions would have benefited Lynn Gilderdale, or others in a similar position, or averted the tragic outcome of this case. A recent large-scale survey by the ME Association found that over 50% of respondents reported that behavioural treatments such as cognitive behaviour therapy and graded exercise therapy were either ineffective or made their condition worse (5). This is consistent with my own recently published study (6), which indicated that inappropriate treatment in the early stages of the illness was an important factor in the development of severe disease, and a survey by Action for ME in which a clear majority of severely affected respondents reported delays in diagnosis and lack of care and support from healthcare professionals (7).
It is not so much that “...an air of defeatism exists within the medical profession about this condition, particularly for those who are severely affected.” It is rather that a realistic assessment is that we do not yet have sufficient understanding of this very unpleasant illness to treat it effectively, and to suggest that we do is unjustifiably complacent. A much more positive note was struck by a letter in the “Daily Telegraph”, published in the aftermath of the acquittal of Kay Gilderdale, which was signed by twenty authorities in the field, including clinicians, researchers, politicians, and leaders of voluntary organisations (8). This stated clearly that, if any positive lesson was to be learned from the death of Lynn Gilderdale and the subsequent trial of her mother, it was that there is an urgent need for better services for people with ME, and more research, in order to disentangle once and for all the underlying pathology of this disease and to develop effective treatments.
References
1. Santhouse AM, Hotopf M, David AS. Chronic fatigue syndrome (editorial). BMJ 2010; 340: 738.
2. R (Fraser and Short) v NICE Case numbers CO/10408/2007 and CO/10435/2007 (2009).
3. Chambers D, Bagnall AM, Hempel S, Forbes C. Interventions for the treatment, management and rehabilitation of patients with chronic fatigue syndrome/myalgic encephalomyelitis: an updated systematic review. J R Soc Med 2006;99:506-20.
4. Essame CS, Phelan S, Aggett P, White PD. Pilot study of a multidisciplinary inpatient rehabilitation of severely incapacitated patients with the chronic fatigue syndrome. J Chronic Fatigue Syndr 1998;4:51-60.
5. Shepherd C. Mind or Body? (Letter). New Scientist 2009; no. 2702 (2nd. April).
6. Pheby D, Saffron L. Risk factors for severe ME/CFS. Biology and Medicine (2009); 1(4):50-74.
7. “Severely Neglected”, London, Action for ME, 2001.
8. The Countess of Mar et al. Breaking the ME enigma (letter). Daily Telegraph, 6 February 2010.
Competing interests: None declared