Rapid Responses to:
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Rapid Responses: Rapid Responses published:
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Role of Carers/Family in management of CFS
- Gunvant Patel (31 August 2007)
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Chronic Fatigue Syndrome: NICE and CDC miss the boat
- Shirwan A. Mirza, MD, FACP, FACE (31 August 2007)
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CFS/ME is not the same as chronic fatigue
- andrew ashley (31 August 2007)
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Belgian Experience of Rehabilitation Clinics for CFS ignored
- Tom Kindlon (31 August 2007)
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CGT and getting people back at work
- Tessa Vinicius (1 September 2007)
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NICE guideline is unfit for purpose and too costly to implement
- Dr Charles B Shepherd (1 September 2007)
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Chronic Fatigue Syndrome: NICE and CDC miss the boat
- Dr Charles B Shepherd (1 September 2007)
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The reality of living with severe Myalgic Encephalomyelitis
- Linda A Crowhurst (2 September 2007)
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Nice Guidlines for CFS/ME
- Stuart Sanders, London W1G 9PH (2 September 2007)
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How little evidence is required to substantiate a NICE Guideline
- Hilary McDermott (2 September 2007)
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Back to basics
- Yamila Samsun (2 September 2007)
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NICE fails define and describe ME
- Jean Long (3 September 2007)
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NICE one!
- Arthur J Finnie (4 September 2007)
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Chronic Fatigue Syndrome
- Sameer Chadha, Shikha Mehta, Sumeet Chadha Medical Students (4 September 2007)
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Re: The reality of living with severe Myalgic Encephalomyelitis
- Clytie A Siddall (4 September 2007)
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NICE and ineffective GET therapy
- DEREK ENLANDER (4 September 2007)
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Canadian Guidelines vs. NICE Guidelines
- Liz Willow (5 September 2007)
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Why not use the internet?
- BETTY BONJOUR (5 September 2007)
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competing interests
- Candida Jones (5 September 2007)
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CBT makes you more ill
- Andrew Ashley (6 September 2007)
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Stakeholders comments on Draft Guidelines make for interesting reading
- Tom P Kindlon (6 September 2007)
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NICE guidelines on chronic fatigue syndrome: omission of attention medication history
- Christopher J Ellis (7 September 2007)
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Quick guideline to ME for busy GPs
- Peter Saunders (7 September 2007)
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A serious lack of evidence for NICE guidelines
- Ruth Nolan (10 September 2007)
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Gunvant Patel, Psychiatrist St Vincents Hospital, Melbourne, VIC 3065
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The Nice guidelines on chronic fatigue syndrome or myalgic encephalitis produced by Baker and Shaw make no mention of the value of involving carers and families in the overall management. Perhaps this is due to lack of 'evidence' from studies and highlights the limitations of such guidelines for clinicians. Family and couple therapy as a means of support and for resolving problematic dynamics would be invaluable in many cases. Competing interests: None declared |
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Shirwan A. Mirza, MD, FACP, FACE, Chairman: Department Of Medicine Clinical Assistant Professor of Medicine Auburn Memorial Hospital, Auburn, NY 13021 USA
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The recent "NICE" guidelines in the UK like their sister guidelines from the U.S. Center of Disease Control (CDC) on this side of the Atlantic both miss the boat. I have seen and analysed hundreds of cases of chronic fatigue over the past decade without ever having to use the term Chronic Fatigue Syndrome (CFS). The problem with these guidelines is that they either omit major causes of fatigue or make flagrant misguided mistakes such as the following “NICE” statement: “Vitamin B12 deficiency and folate levels should not be carried out unless a full blood count and mean cell volume show a macrocytosis”. Vitamin B12 deficiency (or insufficiency) is extremely common even without macrocytosis. Macrocytosis is a very late sign of this vitamin deficiency. Furthermore, a concomitant iron deficiency, such as in celiac disease, would cancel out macrocytosis and the resultant mean corpuscular volume of the RBC would be normal. The reference range of vitamin B12, at least in the USA is outdated and new reference ranges should be implemented (300-1000 pg/ml). It is very common to miss mild vitamin B12 deficiency without checking either homocysteine or methylmalonic acid or both. The latter 2 metabolites would be both elevated when serum B12 is insufficient. Even if B12 level is 300 pg/ml but homocysteine or methylmalonic acid are elevate, a diagnosis of B12 insufficiency should be made and the fatigued patient must be treated. Vitamin B12 is a very common cause of fatigue, malaise, dizziness and vertigo in people labeled with the diagnosis of CFS. Vitamin D deficiency is extremely common above the latitude 0f 36 in the USA. It is even more common in Europe where milk is not widely fortified with vitamin D. The daily requirement of vitamin D of 400 IU a day is a thing of the past but still promoted as if written in stone. The recent research-supported daily requirement of vitamin D is at least 1000-4000 IU a day. 25 Hydroxy vitamin D should be between 32-100 ng/ml (see a recent NEJM review on vitamin D by Michael Holick). 25% of the US population have metabolic syndrome. Many of these have impaired fasting glucose or impaired glucose tolerance (IGT). These pre- diabetic conditions cause fatigue via glycosuria. Fasting glucose measurement is not nearly sufficient to detect early glucose intolerance. A 2-hr glucose tolerance test (OGTT) is abosoluitely necessary to detect IGT defined as plasma glucose of > 130 from 30 minute- 120 minute during OGTT. Many patients with CFS have benign positional vertigo and they don’t know it. They are basically unable to describe their symptoms and for lack of expression they say they are fatigued. In one such case the Romberg test was abnormal and symptoms resolved within 7 minutes of application of the Epley maneuver. I have yet to see a guideline on CFS that is complete. It is a good point that NICE mentions ferritin level, although I prefer iron saturation since ferritin is an acute phase reactant and could be falsely elevated during periods of acute illnesses due to any cause such as infection. Screening for celiac disease was also a good addition since this disease is relatively common in Caucasians (1% of populations with an average of a decade of late diagnosis due to lack of awareness). Addition of sleep apnea is also a step in the right direction. I also recommend addition of free T4 to TSH (at least once) so you don’t miss central hypothyroidism. Serum early morning cortisol should be measured in every patient with CFS. If a male person has sexual dysfunction such as poor libido and erectile dysfunction, muscle weakness and infrequent shaving of beard, a free testosterone by dialysis method plus LH measurement are necessary In summary, for me a patient with CFS is a patient who has not been adequately investigated despite adherence to big- name guidelines of NICE and CDC. A thorough and guided investigation would yield the diagnosis in almost > 90% of patients. By adherence to my own time-honoured investigation, I have succeeded in abolishing chronic fatigue syndrome from my medical vocabulary. References: Holick MF. Vitamin D deficiency. N Engl J Med. 2007 Jul 19;357(3):266-81 Competing interests: None declared |
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andrew ashley, GP Bath, UK
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Dear All and Dear Dr NICE, It is a shame that the canadian and australian guidelines have been completely overlooked by NICE as has happened in many other countries. I must say I do not understand this as the world is so small now with the internet. The guidelines also show that we as doctors are not very good at critical reading, if you read a trial about CBT there are usaully so many essential mistakes and omissions, for example not clear why of a population of 160 patients less than half is selected, they ignore people who abandon the CGT treatment, they have never heard of bedbound CFS/ME patients etc. And worst of all, they can't diagnose CFS/ME. Most of the time they treat people with chronic fatigue instead of CFS/ME, and that is the same as saying I treat patients with Alzheimer's if all they have is forgetfullness. Kind regards, Andrew Ashley Competing interests: No competing interests |
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Tom Kindlon, Unavailable for work due to ill-health Dublin, Rep. of Ireland
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When making recommendations on treatments and service provision for CFS/ME, it is disappointing that the Belgian experience wasn't looked it. Perhaps it was a language issue as the detailed report on the rehabilitation clinics that were set up there for people with CFS (defined by the Fukuda definition [1]) is only available in French [2] or Dutch [3]. According to the report, over 3000 patients were referred to the centres, although only a fraction of them went on to do the rehabilitation programs. The rehab programms were basically a combination of CBT (Cognitive Behavioural Therapy) and GET (Graded Exercise Therapy). A previous review of CFS intervention studies [4] criticised outcome measures used in many studies in the area, saying that "a more objective measure of the effect of any intervention would be whether participants have increased their working hours, returned to work or school, or increased their physical activities." Work capacity was assessed in the Belgian clinics: before rehabilitation, the average amount of paid work was 18.3% (of 38 hours). Immediately after rehabilitation this was reduced to 14.9% (6% worked more, 10% worked less), 6 months later it was 16.7%. That is to say, that at the end of the rehabilitation phase and six months later, people were working less than when they started the programme! [1] Fukuda K, Straus SE, Hickie IB, Sharpe M, Dobbins JG, Komaroff AL. Chronic fatigue syndrome: a comprehensive approach to its definition and management. Ann Intern Med 1994; 121: 953-95. [2] Rapport d’évaluation concernant les centres de référence pour le syndrome de fatigue chronique (SFC). http://www.riziv- inami.fgov.be/care/fr/revalidatie/studies/study-sfc-cvs/index.htm [3] Evaluatierapport over de referentiecentra voor het Chronisch vermoeidheidssyndroom (CVS). http://riziv- inami.fgov.be/care/nl/revalidatie/studies/study%2Dsfc%2Dcvs/ [4] Whiting P, Bagnall A.-M., Sowden AJ, Cornell JE, Mulrow CD, Ramirez G (2001). Interventions for the Treatment and Management of Chronic Fatigue Syndrome: A Systematic Review. JAMA 286: 1360-1368 Competing interests: Assistant Chairperson (voluntary position), Irish ME/CFS Support Group |
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Tessa Vinicius, GP Amsterdam, Holland
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Really interesting to read the Belgium evaluation. In Holland something similar has happened but it has been pushed under the carpet!! Nijmegen claims CGT cures 70% of CFS/ME patients. In 2003 an evaluation was done by an indepent government institute called TNO, one of the psychologists from Nijmegen was part of the committee to help the investigators. Only a very small number of people did get back to work and if they did it was mainly computer work. So they were not cured. You can read this report at: http://www.steungroep.nl/pdf/blattermecvsenwerk2003.pdf it is in Dutch and in English!!! There are some problems with the study but even so (low reponse rates of 40%), the results are interesting enough to have a look at, for example: "In the one year follow-up period, 17% of the population of patients with ME/CFS who were working, became disabled from work. In the same time period, 9% of the population that was disabled from work, returned to their own or another job." So 9% instead of 70%, and then most of them did not go back to their own job either. That means even less than 9% was "cured" unfortunately. So stop wasting time, effort and money in CGT, it will only help those that have either other problems or a depression alongside their CFS/ME. Doctor Stein's report, the canadian psychiatrist, is very clear on that point. This is also available on line at: http://sacfs.asn.au/download/guidelines_psychiatrists.pdf Competing interests: No competing interests |
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Dr Charles B Shepherd, Medical Adviser ME Association, 4 Top Angel, Buckingham, MK18 1TH, UK
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The National Institute for Health and Clinical Excellence (NICE) recommends that everyone with mild or moderate ME/CFS (myalgic encephalopathy/chronic fatigue syndrome) should be offered a course of either cognitive behaviour therapy (CBT) or graded exercise therapy (GET). This is despite published evidence remaining weak (especially for group CBT) and inconsistent [1]. Patient evidence submitted to the Chief Medical Officer's report concluded that CBT produced "no change" in 67% of cases and made the condition "worse" in 26% of cases [2]. Around 50% of respondents reported that inappropriate exercise therapy had also made their condition "worse" [2]. Using the NICE estimate on prevalence, this controversial recommendation will affect around 200,000 people. A one-to-one course of CBT covering 12 to 16 sessions will cost well over £1500. The cost of a professionally supervised exercise therapy programme is also likely to be substantial. So where is around £300 million of new money going to come from at a time when very limited funding for some of the newly established NHS clinical services for people with ME/CFS is now being cut? [3] And where are all the therapists going to come from? Those already in post often cannot even cope with the present workload. These are important questions that I raised at a NICE implementation and planning meeting in October 2006 - but nobody from NICE could provide a convincing answer. These recommendations are going to be of no value whatsoever to many people with ME/CFS. They are also going to be impossible to implement due to a lack of both funding and human resources. REFERENCES 1: Shepherd C and Chaudhuri A. ME/CFS/PVFS - An Exploration of the Key Clinical Issues. ME Association, July 2007. 2: CFS/ME Working Group. A Report of the CFS/ME Working Group: report to the chief medical officer of an independent working group. London: Department of Health, 2002. 3: ME Association. Summary of key points to emerge from All Party Parliamentary Group meeting held in Committee Room 17 at the House of Commons on Thursday 12 July. www.meassociation.org.uk/content/view/307. Competing interests: Physician with personal experience of this illness |
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Dr Charles B Shepherd, Medical Adviser ME Association, 4 Top Angel, Buckingham MK18 1TH
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Shirwan Mirza points out one of the many significant omissions in the NICE guideline - namely considering vitamin D deficiency, especially in those on restrictive diets and lack of access to sunlight. Vitamin D deficiency often goes unrecognised and can cause bone or muscle pain and muscle weakness. The 2007 edition of ME Association guidelines for health professionals - 'ME/CFS/PVFS: An Exploration of the Key Clinical Issues' - does stress this point, but it shouldn't be left to a medical charity to do so. Competing interests: Physician with personal experience of this illness |
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Linda A Crowhurst, Severe ME sufferer Unable to work for 16 years
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The recently published NICE guidelines (Aug 22) on "CFS/ME"are shameful, they ,offer nothing to true ME sufferers. ME; it is waking up in intense unbearable unbelievable pain for 14 years and knowing it's going to probably be the same forever not because it has to be like that but because it is being manipulated like that. Having severe ME is unimaginable ; the experience is so different , intense and unremitting than anything I have ever experienced before. I am never unaware of the range of symptoms that rage through my body , and are over ridingly dominated by intense never ending pain in every millimetre of my skin and muscles, over and throughout my whole body; head shoulders, back, front , arms legs, hands , feet, toes , fingers, eye lids , scalp the souls of my feet, the tip of my nose , my eyebrows even. They all burn, throb, tingle, itch, and hurt in ways indescribably unbearable , along with other unusual sensations that flow and ebb, expand and contract, and irritate beyond belief. My throat hurts, my eyeballs are swollen and itch , prickle, burn, throb , unceasingly, My ears hurt to touch inside and out and noise, even a whisper can be excruciatingly loud and painful. Street noise, cars revving, doorbells, telephone, dogs barking,conversations at normal sound levels , all can torment me. The screeching sound of knives and forks on plates, the sound of people chewing even are exaggerated by my hyperacusis . Any regular sound is intolerable such as a clock ticking, a newspaper rustling, a plastic bag being opened, or someone banging, a lawn mower ,a hoover send out devastating sound vibrations that I feel not only in my ears but in my whole body as pain. I become completely alienated from the world I seemingly and supposedly exist in. I cannot bear to see people because they exhaust me with questions and conversation, with thudding foot steps, loud voices; they irritate me with their insensitivity and unawareness of my hypersensitivity, and hurt me physically - a hug or a pat on the back can be like a huge blow. Light is intolerably bright, television and computer screens hurt my eyes, reading anything causes my brain to somehow overload so that I cannot receive or process information . Written or verbal descriptions both have the same affect. Letters jump around the page or make no sense or shape at all. I stare a lot because it is too painful to focus. I say yes or nod when I cannot even understand the conversation because it is making no sense and my mind has become a fog of nothingness. My head has a huge pressure on top with the deepest of throbs that incapacitates me completely physically and mentally. I often feel as if someone has driven a wedge down the centre of my head so there is no awareness inside it where I should be able to think perceive visualise imagine. As I lie down I feel not only my head throbbing in unstoppable pain waves , but also my hands, my feet, my calf muscles, my face , my lips, my whole body is actually throbbing in unison. As I lie down too weak to sit up any longer, my muscles spasming and seeming like jelly too insubstantial to hold my back upright, I find that I cease to function in even the most basic of movements. I cannot move my fingers. I cannot move my legs or my arms. i cannot reach the glass of water by my bedside despite i am gasping with thirst and my mouth is parched dry. My eyes are dry too, the tear film will not stay covering it so that moving my eyeballs is like rubbing them with sandpaper. Often it seems as if i am looking down a dark tunnel. I do not have full vision. As I fall into sleep or near sleep mode my whole body ceases to move completely and totally. When I sleep I am still semiconscious for a lot of the time, the pain in my body penetrating my awareness or tormenting me with lucid dreams in Technicolor. In the deepest sleep I might feel innerly peaceful but then struggle to reawaken. As consciousness arises I discover I cannot move my eyelids, I cannot open my mouth or speak to call out for help. My breathing is uneven and difficult with my diaphragm muscles struggling to move evenly and properly. My whole body pain has intensified to a vast degree . There is no possibility of movement of any kind. There is no response to any voluntary command to move. My whole body is an immovable throb of burning pain . My face has become palsied. Whole areas of my skin have become numb, particularly severe is my left side,: especially my left ear neck , face and arm,though sometimes oddly enough it switches so that my right side is worse. I have left sided head pain which is intensified greater on that side, for it is still present on the other side too. My lips are numb , my nose is numb , my eyeballs feel numb and grotesquely enlarged. I cannot even move my littlest finger let alone my hand. My feet are numb and my limbs are cold. I lie like this with my bladder bursting, desperate to go to the toilet yet unable to call for help and unable to bear being touched or moved. Any attempt to move me will cause me to spasm and go into such agony that I cannot tolerate it. And so I wait. i wait and wait until touch becomes more bearable, till speech becomes possible, till fingers can be moved and limbs manipulated and knees will lock so that i can hopefully sit then eventually stand with support . The wheelchair waits but motion brings new difficulties. standing brings dizziness and black outs, Motion brings vibration and impossible irritation . Once I have moved a little I may be able to move a little more, but the pain never ever goes away. It is constant in my life and everything i do is filtered through this experience of pain, numbness , muscle dysfunction and acute hypersensitivity. No activity or action is enjoyable physically. There is no position that does not hurt. There is no seating that is comfortable, the pain does not miraculously go or decrease because I lie down - I am in physical discomfort to physical torment every moment in every position. On top of this general all over intense pain i have a damaged hip from a bad osteopathy experience, i have a damaged cartilage in in my knee but my body is too weak to be operated on and my drug and chemical sensitivity plus my sleep paralysis and breathing difficulties make an operation impossible, I have severe period pain, I have painful, tender to touch, throbbing guts and IBS type symptoms, I have a damaged lower back and recently I have hurt my shoulder. I have food sensitivities and drug allergies, I have all over body spasms, i have dental work that I am too ill to have done, I have low level thyroxin, I have low cortisol levels. I have had severe anaemia for the last 2 years . I experience hypoglycaemia regularly. I feel ill all the time and I feel worse after minimal effort. I have been told I have less than 20% functional ability at best and less than 10% at worst. I have a severe and chronic neurological disease that is acknowledged by the World Heath Organization (WHO) at ICD10.9.3. I am unable to manage without physical assistance and have to live in silence and stillness with very little outside contact. because i have such little energy and such severe symptoms. I regularly burn myself because i cannot accurately tell the temperature of hot things such as bath water, hot water bottles. i fall over often and bump into things because i have poor balance, poor spacial awareness and proprioception, poor coordination and I get dizzy. My muscles simply do not work properly. I drop things. I often and daily cannot hold things, like knives. forks, pens, telephones, All my cups and cutlery need to be light or they hurt me to lift. Standing is difficult and hard to explain why , unless you understand the orthostatic intolerance present in ME. My symptoms worsen after any exertion and I completely run out of energy and have to go back to bed. Walking varies from completely impossible to severely limited . I have a wheelchair for indoor and outdoor mobility yet it is still often unuseable because of the complexity of symptoms I experience. Although i live in a beautiful place I have never been able to walk to the village shop, the post office ,go cycling, go to the pub, the many restaraunts, the church services, the cinema, the theatre, go bird watching, go on the local sandy beaches, . Having ME means you lose friends and it is virtually impossible to make new ones because contact is so hard to maintain and normal social events are a torment that become impossible to participate in. You cannot join in family occassions or celebrations - and in the end people stop inviting you, they stop expecting you and often they blame you rather thn continue to reach out in new ways to understand the illness. Holidays are impossible because of poverty, difficulty with travelling, unsuitabley hard beds, potential intollerable environmental noise, chemical sensitivity, and inaccesibility to everything. Visiting others is another virtual impossibility because of multiple sensitivities and just feeling so very very ill al the time .Planning anything is utterly impossible because you never know from moment to moment what you can physically manage. and keeping appointments is extremely unlikely. Why then do I have to keep reapplying for my Disability Benefit every three years, Why did I have to fight and complain about wrong assessments to get my home properly adapted? Why did I have to endure condescension and dismissal by a neurologist not interested in my neurological symptoms? Why do I have to accept psychiatrist’ s recommending inappropriate therapeutic techniques as ‘treatments’? Why do I have to accept the denial of the WHO categorising of my neurological disease in the NICE guidelines and the promotion of a biopsychosocial psychiatrically motivated approach to my disease, when it is not a mental health illness? Why do I have to accept a complete lack of biomedical clinics and a derth of biomedical clinicians in dealing with my disease? Why is there no government backing for physical research? Why are People who have vested interests in insurance companies allowed to be advisors to DWP regarding guidance in my illness? How can the psychiatrists be allowed to define inaccurately my disease with too few symptoms and promote a vague symptom of fatigue that is not the primary dysfunction in ME? How can the psychiatric lobby get away with changing the name to CFS to ensure this wrong focus? How can the neurological nature of this illness be dismissed and people who have neurological symptoms be denied a proper service because of them? How can inappropriate therapeutic techniques be promoted by NICE when they are not wanted by people with ME as they make them more ill and disabled potentially if not actually? Why is the ME community so divided when the issues are so clear? People with neurological Encephalomyelitis are physically ill. They need biomedical research and new biomedical treatments developing. They need physical research to understand the disease and develop a true identification process. They need accurate diagnostic criteria, accurate physical diagnosis and prognosis. They need psychiatry to be placed back where it belongs which is not as a first line involvement with people with ME. They need a Benefit system and an NHS service that is not marred by vested interests. They need GP’s who understand that ME is a physical illness. They need full body mapping and proper in depth tests that will show the wide range of serious dysfunction in the many different systems of their bodies. They need a full biomedical report. They need validating, supporting and valuing. They need new aids and equipment developing that can take into account their very special needs due to acute hypersensitivity. They need easy access to benefits and aids and equipment and services. They need care staff and medical staff and anyone involved in offering an ME service to be properly trained and aware how best to work with people with such complex symptoms. They need to be seen and heard and understood. Services need a complete change and need to be underpinned by sound biomedical research and knowledge. If people with ME and all people who are involved with ME spoke and worked in unison we might actually start to get somewhere. The worst thing about having ME is not the vast array of unending symptoms , that there are no drugs to alleviate, it is the isolation caused by people , both medical, official and in society including families, who do not understand this is a serious and severely disabling physical illness. It is having to live in fear that you wont get your benefits. It is having to accept you will get wrong treatment or poor treatment or no treatment often ,. It is knowing that you are physically ill but here is no appropriate treatment for you and there is not going to be unless the untruth pushed by the psychiatric lobby is drowned out and shown to be false. It is knowing that there are few clinicians if any who can actually help you. It is knowing that you have not had proper tests and that you are not going to get them even though there are tests that could be done. It is knowing that the psychiatric lobby is downplaying this serious neurological illness and saying it is a mental health issue and no research or tests are necessary. It is knowing that you need a proper diagnosis and medical involvement to gain the benefits , but if your GP or clinician or benefit agency doctor is psychiatrically oriented you are simply not likely to get the right help and support that you need. It is knowing that as your neurological symptoms worsen that there are no neurologists who are willing or interested to help you locally and you are too ill to travel to see someone anyway. It is knowing that going to hospital for tests is most likely a waste of time and energy and will lead to disappointment because they are not doing the right tests. It is knowing that if you need drugs for some other condition they may well react badly because of your ME so you do not know if you dare take them. It is knowing that the psychiatric promotion of the biopsychosocial approach is so successful that it is wrongly influencing doctors and nurses who may have to treat you one day and will not understand how very ill you are and will not therefore understand how to treat you properly. It is being too ill to speak or read or write or type or fight for what is your right. It is not knowing who to turn to for help advice support and alleviation of symptoms. It is knowing people are being made worse by psychiatric interventions , even dying from them . It is seeing the psychiatric lobby gain footholds in the institutions that should be supporting people with ME and knowing they are are gaining ground and power. It is knowing that you are really ill but you have not got what you need and there is little hope of getting it. It is understanding why people might commit suicide in this climate of disbelief and dissemination of falsehoods about the true neurological nature of ME. We need to stand up for the name Myalgic Encephalomyelitis. We need to stand up for proper and full criteria , such as Ramsay defined or Canadian defined or hopefully even clearer more up to date but accurate criteria, to identify this specific illness. we need to stand up and demand biomedical research , biomedical input and biomedical clinician involvement. We need to stand up for the truth of our disease. We need to speak out the truth of this devastating physical illness and we need to be strong together. We need to demand that the focus on fatigue be stopped and stopped now. Competing interests: None declared |
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Stuart Sanders, Family Doctor 22 Harmont House, 20 Harley Street,, London W1G 9PH
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NICE has produced timely and well thought-out Guidlines using the acronym CFS/ME which represents a sensible fusion of scientific and colloquial nomenclature.
However, the Guidelines recommend specialist referral (1.5 Referral to Specialist CFS/ME Care) but omit guiding us to which specialist discipline to use. Should our patients be referred to a physician, neurologist, rheumatologist, occupational physician, rehabilitation specialist - whom?
I understand that there are geographical differences in specialist care availability, but how do family doctors access best referral practice?
Competing interests: None declared |
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Hilary McDermott, GP principal Penn Surgery, High Wycombe
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Dear Sir, Thank you for publishing the resume of the latest NICE Guideline - CFS/ME - in this week's BMJ. NICE has a hard job to do - but I had understood its main task to be synthesising evidence to produce national guidelines to good practice. This particular guideline seems to leave much to be desired in this respect. So many of the recommendations are demonstrated to be non- evidence based that it is difficult to understand how this guideline can be defended. I had thought the whole purpose of NICE was to move beyond the GOBSART (good old boys sitting around a table) approach? Wouldn't the money and effort expended in the production of this particular guideline have better devoted to developing the appropriate research base - or working on other topics where a reseach base already exists? Competing interests: None declared |
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Yamila Samsun, psychologist Birmingham, UK
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Why is it, that when a guideline is made, we forget our basics? Dr Ramsay, the infectious disease specialist, wrote a small but very handy book about ME, and as most people know he was the ME pioneer. So you would think that it would at least be worthwhile to have a look at his book. For those of you who haven’t seen it, he wrote a few basic things about ME, but very worthwhile to know (book available for a few pounds via the ME association by the way): “The basic essential in treatment is correct diagnosis. Muscle fatigability whereby, even after a minor degree of physical effort, 3-5 days or longer elapse before full muscle power is restored. Extreme exhaustion, particularly after exercise. Spontaneous (muscle) pain and marked muscle tenderness. Cognitive dysfunction.” Why are there millions of CBT studies but no psychologist has ever done one in patients with (very) severe ME? Just think about it. If CBT would be the solution and the wonder therapy why is there no study showing that patients who are tube fed can eat again because they had CBT? Or they don’t need washing in bed or a bottle for urinating because they now can walk again. The reason is very simple. Of the patients with (very) severe ME, almost all of them have ME. They don’t have psychiatric illnesses or fall in the category, we are all a bit tired at times. It would be really nice if CBT would help/cure them but that is just as likely as it would help patients walk again if they are wheelchair bound due to MS or a spinal cord injury after an RTA. And that is the real reason why there are no CBT studies in patients where there is no doubt that they have ME. And don’t say we can’t find those patients with (very) severe ME, because estimates say there are 50-60,000 of them in the UK alone. Competing interests: None declared |
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Jean Long, unable to work Portsmouth
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The NICE guidelines have done nothing to help patients with ME, as against chronic fatigue, and little to assist their physicians either. The guidelines have failed to include studies that demonstrate patients symptoms are neither psychosomatic nor fulfilling their need for a sickness role. Even recent UK based studies, such as those by Dr David Gow, Dr Jonathan Kerr, Dr Vance Spence and his colleagues at ME Research UK1, are absent: instead NICE seem to have opted for the Insurance Industry’s and the Nijmegen School’s hypotheses. Physicians will remain unsure whether symptoms reported to them are common in ME or comorbid. A better understanding of ME would prevent the current trend of denying patients the same level of medical care and support afforded to others with less controversial diagnoses. The Canadian Guidelines, that Dr Ashley quoted, could do much to dispel the myths about ME and ensure more sound clinical judgements. There have been far too many reports of patients not being believed and so the necessary tests are refused, often on the grounds it would be pandering to the patient’s misguided illness beliefs. This trend has led to many patients with ME being denied comorbid diagnoses and subsequent treatments: it’s a serious matter when a successful outcome is dependant upon early intervention and regular follow ups. Patients have reported that severe and life threatening allergies to medications have been disbelieved purely on the grounds that since they have ME they must be exaggerating or making it up. Others have waited years, sometimes decades, to have investigations carried that are standard practice. One patient was asked by a hospital based physician why a long standing problem had not been investigated, the only answer she could give was “I’ve been diagnosed with ME”; it took just one simple test to confirm a neurological cause. 1 www.meresearch.org.uk Competing interests: None declared |
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Arthur J Finnie, retired London NW3
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My television broke down and it was most annoying and really very inconvenient. However, I found that whacking it with both hands simultaneously on both sides of the unit gets it to work a bit, the "clearest evidence" that I'm really onto something, which has nothing to do with faggots or fallacies*, and I'm taking this up professionally. In the United Kingdom televisual failure is "relatively common" although good "data" supporting this contention is completely "lacking" - but never mind. Although the reasons for televisual malfunction "cannot yet be fully explained", as a professional I shall nevertheless be able to accurately "provide information on possible causes", and I shall "establish a supportive, collaborative relationship" with my clients and their extended families, and their neighbours and pets for a bit of extra leverage, and I shall "not delay" in giving my professional whacking "advice", whether they want it or not. When I visit a client I shall only check out the fuses in the hallway and make sure there aren't any blocked drains. Having ruled out blockages and blow-outs, I shall then reinterpret, for the benefit of my clients of course, any theories they may still foolishly preserve about why the television went phut in the first place, because obviously,”misperceptions about the nature" of televisual failure "may hinder implementation" and consent to my whacking plans. I shall also check their bookshelves and command they burn anything to do with science, especially epistemology and material relating to the nature of "evidence" (x10) and it's less than straightforward complexity and warranty, and any literature revealing the tricky dynamics and limitations of group consensual processes**, especially where there’s little and only weak evidence strongly held, that can be dangerously combined with beliefs about the unknown. The fact that "little research exists" on televisual failure "generally", and "specifically on its causes", is no excuse for rejecting my services however. This is simply a “barrier” in need of "overcoming". I shall probably need to adopt an "integrated multidisciplinary approach" including astrologers to prognosticate, graphologists to interpret the questionnaires, and tarot card readers to magically change the "misperceptions" of my clients, thereby instigating a "collaborative" force to overcome their foolish resistance, hopefully improving on my previous solo attempts at correcting their very real wrong "thoughts, feelings, and behaviours", which all interact alchemically under conscious evidence-based control, while I can get on with the more important and highly complex intervention of whacking, the technique for which I believe I am really the most "appropriately trained" expert alive today. I really do “recognise” the need to have a look inside the box at some point in the future, and surely that's much more than enough to be going on with? *http://www.ahrq.gov/clinic/jhppl/haack2.htm An Epistemologist in the Bramble-Bush: At the Supreme Court with Mr. Joiner "The faggot fallacy is a belief that multiple pieces of suspect or weak evidence provide strong evidence when bundled together" **http://is.njit.edu/pubs/delphibook/ch8.pdf The Delphi Method: Techniques and Applications Harold A. Linstone and Murray Turoff, Editors Eight Basic Pitfalls: A checklist: “A dogmatic drive for conformity, the "tyranny of the majority," sometimes threatens to swamp the single maverick who may actually have better insight than the rest of the "experts" who all agree with each other. http://www.brame.org/contact2.html "I have resigned from the NICE Guideline Development Group" http://guidance.nice.org.uk/page.aspx?o=310698 "Why do we need to do consensus work, using techniques like a Delphi survey?" - The development of the guideline for ‘Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management of chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy) in adults and children’ Competing interests: None declared |
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Sameer Chadha, Medical Student Maulana Azad Medical College, New Delhi, India, Shikha Mehta, Sumeet Chadha Medical Students
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Chronic fatigue syndrome (CFS) is a disorder of unknown etiology which possibly has an infectious basis. It is a state of chronic fatigue, which exists for a year or more, and is accompanied by cognitive difficulties. One or more viruses have been implicated as the cause of CFS except the Epstein- Barr virus. CFS is also termed as encephalomyalgia because clinical features of CFS include both an encephalitic component (cognitive difficulties) and skeletal muscle component (chronic fatigue). Hypoperfusion of frontoparietal areas of the brain is responsible for cognitive abnormalities in CFS. History- Patients with CFS present with prolonged unexplained fatigue. They often give a history of an antecedent infection. Patients with these infections have fatigue during the acute illness, but the fatigue resolves as the patient recovers. In patients with CFS, the fatigue continues for a year or more after they have recovered. The other complaints of patients include problems with short-term memory, verbal dyslexia and excessive postexertional fatigue. The diagnosis of CFS depends on eliminating other causes of chronic persistent fatigue like lifestyle, malignancy, HIV, adrenal and thyroid disorders. If the above conditions can be excluded, then the diagnosis of CFS may be considered. Physical Exam- The physical examination often reveals no abnormalities. Left axillary node involvement and/or crimson crescents in the oropharynx are the most consistent findings. Differential Diagnosis- Differential Diagnosis include Fibromyalgia, Hypothyroidism, Lyme disease, Adrenal insufficiency, Malignancy, AIDS, Liver disease, Renal disease Lab Studies- Laboratory tests are used to exclude other fatigue-causing diseases and may be helpful in making the diagnosis of CFS. The most consistent lab abnormality is an extremely low (ESR). Thyroid, adrenal, and liver function tests are useful in excluding disorders that may have a fatigue component. Most patients with CFS usually have 2 or 3 of the following abnormalities: Elevated IgM/IgG coxsackievirus B titer Elevated IgM/IgG HHV-6 titer Elevated IgM/IgG C pneumoniae titer Decreased NK cells Imaging Studies: CT scan or MRI of the brain is useful to rule out CNS disorders in patients with otherwise unexplained CNS symptomatology. Results are normal in patients with CFS. Positron emission tomography scans show hypoperfusion in the frontoparietal/temporal region, which is the anatomical substrate for CFS cognitive abnormalities. Competing interests: None declared |
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Clytie A Siddall, disabled Renmark SA 5341
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I have severe ME, 3%-5% capacity on ME activity scale [1]. Thankyou Linda. You speak for me. [1] http://www.ahummingbirdsguide.com/ Competing interests: None declared |
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DEREK ENLANDER, CONSULTANT PHYSICIAN NEW YORK 10065
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Dear Editor: I have followed the NICE committee's recommendation of Graded Exercise Therapy (GET) with some interest. (1,2) I decided to attempt to determine the effectiveness of the Graded Exercise Therapy (GET) protocol in a known patient group suffering from Myalgic Encephalomyelitis (ME). The protocol was tested in a simple manner without double blinding but the original research was also subjective. Twenty patients with Myalgic Encephalomyelitis (ME) diagnosed according to the Fukuda criteria (3) were started on the GET protocol. After 24-48 hours of the onset of GET, twelve of the patients succumbed to relapse in their symptoms: massive fatigue, increased muscle pain, pains in joints, brain "fog". During the following week seventeen of the twenty patients suffered from increased symptoms as delineated above. The protocol was continued for three weeks. There was no improvement. Some patients were so severely affected that they were bedridden for four weeks following the protocol. GET was pronounced as the most effective method of treatment of ME by NICE. From this short but rather apparent review of the GET protocol, it is obvious that either the study group used initially by the NICE research did not suffer from ME or the results were not adequately analysed. It is apparent that this treatment is not the treatment of choice, in fact it is detrimental to the well being of the ME patient. The psychiatric psychopolitical group have used GET as a lever to support their theory, GET is unhelpful and unhinges their theory. Sincerely, Derek Enlander, M.D., M.R.C.S., L.R.C.P. New York refs. 1 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 2 Turnbull N et al. Finalised NICE Guideline; Chronic fatigue syndrome / myalgic encephalomyelitis (or encephalopathy): diagnosis and management of chronic fatigue syndrome / myalgic encepyalomyelitis (or encephalopathy) in adults and children. Royal College of General Practitioners, London, 22nd August 2007 3 Fukuda et al, Ann of Internal Med, Vol. 121, December 15, 1994 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 Competing interests: None declared |
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Liz Willow, disabled 04874 (U.S.)
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Please consider reading the Canadian Consensus Guidelines on M.E. You'll find they're quite different from the NICE ones. One can access the document (in PDF format) at the following URL: http://www.co-cure.org/ccpccd.pdf I, like Linda Crowhurst, am very ill with severe Myalgic Encephalomyelitis, which bears no resemblance to "Chronic Fatigue Syndrome". While I don't live in the UK, I had to "prove" my symptoms were not psychiatric to receive much-needed disability income. The tests showed neurological problems. No psychiatric issues were present. My exercise intolerance was also verified through objective testing. How in the world can anybody think that CBT and GET could possibly be a viable treatment in cases like this? How can so much research into Myalgic Encephalomyelitis (as defined by Ramsay, et al.) be ignored? Competing interests: None declared |
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BETTY BONJOUR, FAMILY PHYSICIAN Toronto
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Dear Editor, As NICE forgot to read the Canadian and Australian guidelines and have now gone back to fatigue and just one symptoms, it might be a good idea to help them with a few quotes from the Canadian guidelines, as an appetiser so to speak, of guidelines which have actually tried, very successfully, to distinguish ME from other causes of fatigue. “Before acquiring the illness most patients were healthy, leading full and active lifestyles. ME/CFS most frequently follows an acute pro- dromal infection, varying from upper respiratory infections, bronchitis or sinusitis, or gastroenteritis, or an acute flu-like illness.” (for other causes see the guidelines at: http://www.co-cure.org/ccpccd.pdf “It is more prevalent in females (522 per 100,000), as is arthritis and rheumatism. When comparing the ME/CFS prevalence figures for women with those for other illnesses, such as AIDS (12 per 100,000), breast cancer (26 per 100,000) (36), lung cancer (33 per 100,000) and diabetes (900 per 100,000), one realizes the need for a clinical definition and research for ME/CFS.” “The panel felt there was a need for the criteria to encompass more symptoms in order to reflect ME/CFS as a distinct entity and distinguish it from other clinical entities that have overlapping symptoms. As fatigue is an integral part of many illnesses, the panel concurred that more of the prominent symptoms should be compulsory.” “Since the development of our clinical criteria, we have had an opportunity to review the analysis of symptoms in over 2,500 patients by De Becker et al. (45). They found that the Holmes” (=CDC) “definition and the addition of ten other symptoms strengthen the ability to select ME/CFS patients. Based on this study, we added exertional dyspnea and muscle fasciculations to our clinical definition.” So why not use the internet? That would have saved you a lot of work in trying to invent the wheel again and your guidelines would have actually helped to guide us doctors, instead of causing confusion. Competing interests: None declared |
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Candida Jones, Medical Journalist I use the internet, and you?
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The recent Gibson enquiry acknowledged “the need to properly identify all the illnesses that come under the ME/CFS umbrella.” Which was exactly what the Canadian guidelines were doing and what does NICE? Fatigue and one symptom ---> widening of the umbrella. Job well done. More chances for the psychiatrists to say ME is a psycho illness. You are asking me if I have competing interests. Have you asked NICE the same question? Competing interests: None declared |
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Andrew Ashley, GP Bath
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Dear Editor, I have been going through the responses and in Belgium 18% worked before CBT and Nijmegen claims 69% gets cured by CBT than 18 plus 69 = 87%, so 87% should be back at work after CBT. But apparantly it is only 14.9%; so what is the evidence for treating ME with CBT? Competing interests: None declared |
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Tom P Kindlon, Unavailable for work due to ill-health Dublin, Rep. of Ireland
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I thought I'd point out that one can view on the NICE website [1], the
"Chronic fatigue syndrome / Myalgic encephalomyelitis: stakeholders comments and GDG responses".
Not only do these files give an idea how NICE came to its conclusions but it also gives information on dissenting voices and views and suggestions that weren't mentioned in the final version. Some comments were quite scathing. For example, a representative from the Association of British Neurologists made the following submission of his/her personal views: "The draft guideline is fundamentally flawed because it presupposes certain interventions (CBT and GET) to be highly effective in CFS/ME for routine clinical use despite lack of adequate evidence". "The guideline is also selective in its review of existing literature and is heavy influenced by psychiatric view of the condition. Indeed, it almost seems to the reader that a select group of psychiatrists with a polarised view of this complex condition is directing the development of the guideline from "behind the scene"." "The guideline needs to be thoroughly revised to reflect our current understanding of this condition rather than the supposition of the psychiatrists" "It would be immoral for NICE not to recognise the huge dissatisfaction about this draft guideline among most patients, carers and clinicians" Many ME groups made points along similar lines as well as referring to evidence to challenge certain points. The submissions are very interesting as a way to give an idea where various associations, bodies and services stand on certain issues. For example, in response to the following line in the draft: "For adults and children with moderate or severe symptoms, provision of equipment and adaptations (for example, a wheelchair, blue badge or stairlift) to allow individuals to improve their independence and quality of life should be considered, if appropriate and as part of an overall management plan", St Bartholomew's Hospital Chronic Fatigue Services says: "We disagree with this recommendation. Why should someone who is only moderately disabled require any such equipment? .." This suggests to me that they may not understand the practicalities of living with the illness - even if one is trying to do a graded exercise therapy programme as they suggest, there are going to be instances where if one can't park near a building (as one can with a blue badge), one is going to end up walking quite a distance, thus overdoing it for that day and interfering with the program. On the issue of group CBT, which is available in many NHS CFS services around the UK, St Bartholomew's Hospital Chronic Fatigue Services gave the following research information: "The only RCT of CBT using a group approach showed that the treatment was no better than either usual medical care or supportive listening in improving physical function, one of its two primary outcomes, which it was designed to improve (O'Dowd H, Gladwell P, Rogers CA, Hollinghurst S, Gregory A. Cognitive behavioural therapy in chronic fatigue syndrome: a randomised controlled trial of an outpatient group programme. Journal: Health Technol Assess. 2006 Oct;10(37):1-140). A non-randomised waiting list control trial of group delivered CBT found only modest effects on fatigue and negative effects on function (Bazelmans E, Prins JB, Lulofs R, van der Meer JWM, Bleijenberg G. Cognitive behaviour group therapy for chronic fatigue syndrome: a non-randomised waiting list controlled study. Psychotherapy & Psychosomatics 2005;74:218-24)." A lot of effort was put into these submissions and there would be a lot of useful information and ideas within the files, if guidelines were to be drawn up in other countries (or, for another purpose, in the UK). [1] http://guidance.nice.org.uk/page.aspx?o=449805 Competing interests: Assistant Chairperson (voluntary position), Irish ME/CFS Support Group |
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Christopher J Ellis, Consultant Physician Birmingham Heartlands Hospital, B9 5SS
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NICE Guidance on the diagnosis and management of chronic fatigue syndrome fails to direct practitioners to inquire into the medications that fatigued patients are taking. Between 10 and 20% of patients referred to this unit because of chronic fatigue are regularly taking medications for control of pain which are known to cause drowsiness, notably opioids and agents aimed at relieving neuropathic pain such as gabapentin. Patients with chronic fatigue syndrome commonly complain of “muscle and/or joint pain that is multisite” so this is hardly surprising but the role of these medicines, on which patients often become dependent, in exacerbating, perpetuating and in some patients actually originating the fatigue is regularly overlooked. American(1) and Australian(2) case definitions require exclusion of substance abuse before the diagnosis can be made but the UK(3) case definition omits any consideration of medication. Substance abuse, ingestion of narcotics and/or unrecognised drug dependence and chronic fatigue syndrome are not mutually exclusive but must be identified if the patient is to benefit from, rather than be harmed by, medical intervention. Christopher Ellis 1 Fukuda K, Straus S, Hickie I, Sharpe M, Dobbins J, Komaroff A. The chronic fatigue syndrome: a comprehensive approach to its definition and study. Ann. Int. Med. 1994; 121: 953-959 2 Lloyd A, Hickie I, Boughton R, Spencer O, Wakefield D. Prevalence of chronic fatigue syndrome in an Australian population. Med. J. Aust. 1990; 153: 522-528 3 Sharpe M, Archard L, Banatvala J, et al. Chronic fatigue syndrome research: guidelines for research. J. R. Soc. Med. 1991; 84: 118-121. Competing interests: None declared |
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Peter Saunders, GP Perth, Australia
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Dear Editor, Reading the NICE guidelines for most busy GPs is a problem, as there are so many other things to do. A friend of mine who is a GP (severely affected by ME) and now has domestic help etc suggested to put a few tips on paper as many GPs believe ME doesn’t exist or is a form of hysteria. Tip ONE: if a patient comes to the surgery, have a look at the size of his docs, if he has never been or only rarely with real problems than he is not a malingerer or a hypochondriac. Tip TWO: there are a lot of differences between hysteria and ME but two easy ones are: Belle indifference and shallowness of affect. Both of which you won’t see with ME. Tip THREE: hysteria has been binned from the DSM when they realised they made a big mistake naming MS hysteria. If you encounter a psychiatrist who still uses the term hysteria you have to be careful because in that version of the DSM homosexuality might still be a psychiatric illness. Tip FOUR: ask how long someone with fatigue needs to recover from even a simple task. Patients with ME don’t recover from simple tasks like healthy people, something you don’t see with (most) other forms of fatigue. Tip FIVE: discuss CBT, if it cures the patient your diagnosis of ME was wrong. Tip SIX: ME patients have the so called threshold phenomenon, meaning that they can’t increase their stamina like healthy people. If they can or if GET helps to improve their stamina then again, the diagnosis of ME was wrong. Tip SEVEN: ask about muscle pain. If they have it, it is so extreme and completely different from a bit of pain after a strenuous run. And NSAIDs look like smarties and have the same effect. Tip EIGHT: have a look at page SIX of the Australian guidelines where you can find an easy to use tick chart of symptoms to distinguish ME from other illnesses with fatigue. This will help a lot because there is no cure at present for ME but for many other illnesses with fatigue there is. And the patient will be cured and grateful. Print it to have it ready when needed; it is available at: http://www.investinme.org/Documents/PDFdocuments/c6a_mecfsguidelines.pdf Tip NINE: take a proper history, examine the patient and do lab tests. This might sound obvious but my friend was seen by three GPs on twelve occasions and no one even bothered to take a proper history or do anything. He hadn’t been to the surgery in 15 years but that didn’t help. Until he saw the fourth GP, who thought, never been ill, never been here before, so he must have a problem. Tip TEN: diagnose ME (if so), explain no cure and uncertain prognosis and you have answered all questions and your patient will not only be grateful for that but you won't have a difficult patient because he knows what is what. So help him and yourself by using this simple guide. Last TIP: remember, even if you don't believe it exists, you might still get it yourself. There are studies suggesting that teachers and doctors are more at risk. Competing interests: One of my friends (a GP) has severe ME |
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Ruth Nolan, Unable to work due to M.E. Ireland
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I find it hard to believe that NICE could produce such inept and potentially harmful guidelines. They have been rightly condemned by the ME Association as “unfit for purpose”, and I echo their call for the guidelines to be “withdrawn and rewritten by a group of health professionals who unambiguously accept that they are dealing with a physical rather than a psychosomatic illness”.[1] Not only have NICE failed to acknowledge the WHO classification of ME as being Neurological, they have failed in their task to produce guidelines based on best available evidence, promoting as they do, CBT and GET. The few RTCs on both therapies have had fundamental flaws such as using the Oxford definition of CFS which bears no relation to genuine ME(ME/CFS), including only fatigue without the need for other physical symptoms, (this can include those who have depression, burn out, anxiety etc), they have not shown evidence of objective measures of improvement e.g. increase in activity as measured by a pedometer, and have failed to account for high dropout rates. Surveys have found that for the majority of patients these two therapies either had no effect or have caused deterioration [2] and even the few vocal proponents of these so called treatments have acknowledged their ineffectiveness describing them as “modestly effective” and not “remotely curative”. [3] In submissions to NICE, The British Psychological Society said that “there is no evidence that GET (with or without CBT) actually increases activity levels”, the Royal College of Physicians said “Clinical evidence and patient experience suggests strongly that some patients may be worsened with GET”, while the Association for British Neurologists said that “the guideline needs to be thoroughly revised to reflect our current understanding of this condition rather than the supposition of the psychiatrists”.[4] The increasing body of biomedical evidence (which NICE has been made aware of) supports the contention that ME has an organic pathogenesis and is worsened with exercise, however with NICE’s further widening of the inclusion criteria to include those with common fatigue, people with psychological/psychiatric illnesses will be diagnosed with ME or CFS, while those with genuine ME will be treated as psychological/psychiatric patients. It’s a sad day when NICE condemns patients to inappropriate and harmful treatments and doctors to confusion and potential law suits. [1]NICE guidelines on ME/CFS – Statement by the ME ASSOCIATION Board of Trustees http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0709a&L=co- cure&T=0&P=6787 [2]The 25% M.E. Group -2004 Severe ME analysis report http://www.25megroup.org/Group%20Leaflets/Group%20Leaflets.htm [3] Wessely S.: "Chronic Fatigue Syndrome—Trials and Tribulations" JAMA.2001; 286: 1378-1379 [4] http://guidance.nice.org.uk/page.aspx?o=449805 Competing interests: None declared |
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