Is it M.E. or is it me?

Has it started over the winter? I think it would be worth trying kinesiology, but not telling them what the problem is. Sounds like it could be some problem in the immune system, which may require cutting certain foods, chemicals, cosmetics or activities out. thre NHS is usually a waste of time unless its structural.

Not much of a suggestion, but it might help your financial situation if you cut out any 'alternative therapy' that you're having to pay for. How is that 'alternative'? Investigate yourself via the internet, or ask around for people locally in your circle of friends. If people demand payment for the possibly effective mumbo jumbo, stuff 'em.

I have been feeling wiped out for well over a year, but am finding it very hard to explain to people who know me that I am not just overdoing it /stressed/ in need of a holiday.

That i didn't used to go to bed at 7 or 8pm on workdays, or want to.

That wanting to sleep after a walk is not me, and that I used to be able to stay up after midnight without turning into a pumpkin.

That doing more sport, as recommended by doctors and family, who think i am lazy, is not an option when getting out of bed and getting dressed is enough to make you want to crawl back in, and walking to work wipes you out for the morning.

I look the same, I sound the same, I feel like a fuzzy, blurred, slow motion me, who has to think before she can speak, and make a conscious effort to listen all the way to the end of anyone's sentence, and even then I can see my glazed over face reflected in the speaker's, and wish I had a sign saying that i was out of order, my faculties absent without leave.

I used to be quick witted, and fairly physically active, but how can I explain that to a doctor and a manageress who just think I'm after an easy sick note?

This is an excellent overview of ME/CFS and a moving personal account. Big thanks to Jane for bringing this into the open.

There are two other possible sources of help locally –

1) In January 2002 the Chief Medical Officer published his report into ME/CFS, and this at last gave ‘official’ acknowledgement to the illness. Following this, in 2003, the Government announced new money specifically for services for people with ME/CFS, and Sheffield was successful in bidding for some of this. A multi-disciplinary team of 6 is now being set up in the city (physiotherapists, occupational therapists and clinical psychologists). It’s early days yet and the team is not yet taking referrals from GPs – a good referral for GPs to make, where ME/CFS is suspected, is to Dr Steve Green at the Royal Hallamshire Hospital. This small team will cover a huge area including all S Yorks and N Derbys, but at least a start has been made.

2) Sheffield M.E. Group is here to provide some help. We have an Information Service on 292 2311 each weekday morning plus Mon and Tues afternoons, and a Listening Ear Service on 258 0146 each weekday from 5pm to 6pm. We are a membership organisation with regular newsletters and social and educational events.

Nicola, please phone us, and/or visit your GP, about how you are feeling. A doctor should understand your symptoms. Most importantly, don’t keep on trying to push yourself through this – with ME/CFS this is the worst thing you can do (note – I am not diagnosing you with this comment – just saying, please go to your doctor or phone us).

Fist of all can I say that this is is a beautifully written piece by Jane and it may be worth circulating amongst the M.E community. It’s also good to see it on Indymedia: health and welfare are very important issues and should be more widely covered. For me, the article captures the overwhelming nature of the condition and the culture of disbelief from the wider population. M.E is a horrible debilitating and much understood condition and articles like this can only help public understanding. PWME are imo, very brave courageous and posess a stoiciscm that is extremely admirable. I hope the writer improves and ultimately gets well, though like many devastating illnesses, in my long experience , as she says 'no one is exactly the same again after the illness'.

I have had ME for over 12 years and had faced all the above and perhaps much worse, having no income savings, etc. no past career, and no local family support. Coming to Sheffield to start a new life after many trevails and then to get M.E is more that the heart and mind can cope with: life stopped the day I got this condition.
Even in the activist community there has been slurs , stigma, disbelief, though I have to say things have changed recently and I/others receive much needed support for it through these channels. The illness is such it is very very hard to accept, the symptoms being so unpleasant, so varied and fluctuating: they change over time, even over short periods like an hour. No one appears to have exactly the same symptoms though there is a constellation of symptoms that most PWME share. For instance while fatigue may be the key thing for many, for others it may be ‘brain fog’ and the devastating loss of mental faculties, for others it may be the awful problem of bowel control, other intense excruciating pain, many it may be all four and many more.

Returning to the article, it is hard to find anything I disagree with in it, except perhaps for one thing. M.E can affect anyone, it is not just ‘doers’ or people who have been in high powered jobs or worked incredibly long hours, though they can indeed be triggers.

A study from Chicago, indicted that people from all classes, racers, genders, et can be affected, although it is females that are likely to have the condition.

 http://www.meao-cfs.on.ca/about_me/prev.shtml


‘Conclusions: Chronic Fatigue Syndrome is a common chronic health condition, especially for women, occurring across ethnic groups. Earlier findings suggesting that CFS is a syndrome primarily affecting white, middle-class patients were not supported by our findings.
Leonard A. Jason, PhD; Judith A. Richman, PhD; Alfred W. Rademaker, PhD;
Karen M. Jordan, PhD; Andrius V. Plioplys, MD; Renee R. Taylor, PhD;
William McCready, PhD; Cheng-Fang Huang, MS; Sigita Plioplys, MD.
Full text of the journal article
Arch Intern Med. 1999, 159:2129-2147’

I also think it is unlikely that Barbara Windsor or indeed Martine McKutcheon, David Putnam, etc, have had full blown M.E as they have claimed, more likely they have had what is known as post viral fatigue. I may be wrong but to be able to do a fitness video, as ‘Babs’ has done so soon after the condition is unlikely and imo not very wise.
The article highlights the dependency/value of alternative medicines, this I can concur with to a point: from herbal medicine to Shiatsu, to more esoteric stuff like the Chi machine this does help. In my experience and I have met hundreds of people with the condition, there is definitely some improvement and certainly an improvement in well being. However, one should be cautious: , you can easily spend thousands on such therapies and still have the condition. However, personally if there is to be a cure, I think it will come from traditional medicine, such as a new drug.

The NHS however is failing us and even the new M.E/CFS clinics (there is one in Sheffield)s are apparently focussing on the problematic Cognitive Behaviour Therapy (CBT) and graded exercise(G.E) treatments. In my view both dangerous and suspect for those with the condition, for more see below. I do agree with the article that rest is essential and I would assert, (but this is not medical advice) PWME should consider stopping working for a time, I carried on and paid the price. Unlike all other illnesses we seem to have few allies: support groups, a few progressive doctors, some advice workers, but not many others, there is still much ignorance and sometimes downright lies amd smears such as the rubbish ‘writer’ Victor Lewis Smith comes out with in the London Evening Standard newspapers, amongst others. However, all this does not really make sense as nearly everyone one one meets knows someone who has had the condition, after all over 200, 000 people in the U.K have ME/CFS or related conditions, why are they not raising their voices, raising funds, etc ?


Although a former committee member of a local support group I have for various reasons kept away from M.E politics, not least the fact we were losing the battle. However, having now read the incredible Skewed, which showes the links between those who want to define M.E as a mental illness and their links with big business, the MOD, and insurance companies such as UNAM which have vested interests in the issue i think we must speak out..

SKEWED
Martin J Walker
In Skewed, Martin Walker takes a penetrating look at the ‘emerging illnesses’: Multiple Chemical Sensitivity (MCS), Gulf War Syndrome (GWS), Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS).

 http://www.cygnus-books.co.uk/mind_body_spirit_books/skewed.htm

My interest/concern has also been raised as i have been invited(but refused) to become one of the first recipients of what now seems to be an official shift to push people in the direction of mental health treatments, which amongst other awful things will have serious implications for our welfare benefits. I really can stay silent no longer. It is now becoming clear with the arrival of the the new clinics primarily based in psychiatric units that M.E is to be treated by the NHS as a form of abherant behaviour on a par with drug or alcohol addiction and that Cognitive Behaviour Therapy along with graded exercise is to be the recommended course of treatment

Looking at a job description for staff at on of the a new Chronic Fatigue Clinics, one could argue it is becoming even clearer what is current thinking in relation to the condition.


Job vacancy 1:
>
> Employer: Royal Liverpool & Broadgreen University Hospitals NHS Trust
>
> Job title: Trainee Clinical Fatigue Therapist
>
> Chronic Fatigue Treatment Service
> Ref: 2570
>
> For informal enquiries please contact Pauline Powell or Fran Morgan,
Senior
> Therapists www.rlbuht.nhs.uk.
>
> Closing date: 31st January 2005
>
> "The service has a multi-disciplinary team (MDT) that provides a
unique
> treatment which involves explanation of symptoms, self-managed graded
> exercise, psychological support and motivation to patients with
chronic
> fatigue syndrome. Improvements in health are achieved and results are
> monitored."
>
> "WORKING ENVIRONMENT
>
> 1. Psychological treatment involves delivering a highly complex
> understanding of the psychological, physiological and social factors
of
CFS
> to severely disabled, fatigued patients and relatives, in order to
change
> perpetuating illness behaviour and motivate patients to perform a
> self-managed activity programme, regulate disturbed sleep patterns
and
> modify predisposing personality style.
>
> 2. Clients with CFS, because of their chronically fatigued state,
> experience barriers to understanding. For some clients there can be
> significant barriers to accepting the changes needed in behaviour,
which
> have to be overcome in therapy in order to facilitate a successful
outcome.
>
> 3. The post holder can be required to work frequently in an emotive
> and demanding environment with exposure to distressing problems and
must
> maintain a high degree of professionalism at all times.
>
> 4. Requires intense concentration and prolonged periods of sitting
> whilst assessing and providing psychological therapy for clients with
CFS.
> Individual treatment sessions are up to 2 hours long, twice weekly
group
> sessions are 3 hours in length, and frequent counselling phone call
sessions
> are up to one hour long.
>
> 5. As some clients with CFS may be resistant to working in a
> psychological framework there may be exposure to verbal aggression.
>
> 6. Clients are frequently seen on a one to one basis without other
> staff immediately nearby."
>
> ________________________________________________
>



Thus, now we don’t have a biological illness or organic condition, but experience ‘barriers’ to understanding the complex psychological nature of our condition. In a sinister Soviet Union style, are we to be brainwashed into rethinking our illness
so we can go on the Govt’s Pathways To Work and become a good citizen. Moreover, such a re-defining on our condition into a mental illness will have inplications for the levels of benefits we receive. One could almost see the hidden hand of the DWP and the Govt: once defined as a mental illness we are much more susceptible to the Govt’s Pathways To Work schemes, which will attempt to push us back into work, thus ensuring we become good ‘active’ citizens again. Much of the above agenda has been promoted by one central figure Simon Wellesley, Professor of Psychiatry at Kings Hospital, London and a wider ‘Wellesley School’ of acolytes. However, I personally think Wellesley et al has been weakened by the latest report into Gulf war System which they have been denying exists. I do believe he will one day be as discredited as Sir Roy Meadows, of Cot Baby Deaths infamy , unfortunately that then may be too late for many of us.


What can we do?


I suggest we must take a more procative stance, that by pushing patients into MH clinics, they (the medical profession) has crossed the rubicon and we must challenge this new emerging orthodoxy with all our limited resources.

So perhaps we need to open up a second front as it were, (sorry for the military analogies) I think it is in the wider area of public opinion that we can make great inroads and intervention, As I have said above, one thing has struck me is the lack of allies that we have, there are over 150- 200, 000 PWME in this country, nearly everyone knows someone who has ME, yet the turnout for the annual demo on May 12th is really low, fundraising despite the sterling efforts of M.E groups and activists is minimal. So, how can we gain more allies?

I think the first positive move could be the annual ME demo/lobby in London in May, while respecting the origins of the event, it is a public demo and perhaps we could ask our friends and allies to come and to be more erm, pro-active on the day. A model we could use, (though recognising our physical limations) would be that of Act-Up who in the late 80’s really pushed the Aids agenda up the political ladder. To me, another key area(for those who are able) would be to get more involved in the local groups: for numerous reasons, some quite understandable others not so much, many of these have accommodated and been very conciliatory to the NHS, the DWP, and other agencies of the state. But for me, an effective local support group which sees campaigning as a central focus of its activities could really through its membership, contacts and local media ‘ratchet up’ the issues, and challenge the new MH protocols

We must continue to raise the issues in the press, on tv, write to our m.ps , not be worried about stigma, and tell our friend and allies about the condition. Bring the illness out of the darkness as it were, and let people know the truth.,,

resources

The defintive campaigning group:  http://www.meactionuk.org.uk/





































Btw, a main reason I have rarely contributed to the list, despite having me for 12 years is the way new post often repeat what was was said in the previous post, isn’t there away to edit, them so one doesen’t have to wade thru reams of text, very difficult for those with cognitive problems.


While not commenting on the intercine warfare prevalent within the ME community,

I really would like to commend Kev for his inspirational call to arms. I do think we are now at war with large parts of the medical establishment and need to respond accordingly.



This site I see is an incredible and valuble tool in this battle and I thank its contributors and of course Stephen.,


The most disturbing element of the job description is that any opposition by to this framework will be indentified as aggressive behaviour by the patient.






Well for me that can no.longer ---------------, by pushing patients into MH clinics, they (the medical profession) has crossed the rubicon and we must challenge this new emerging orthodoxy with all our limited resources.


While many think the best route it to ------

Following on from the discussion about the role of psychiatrists in the defining and treatment of M.E: here is an interesting article about Wellesley and his acolytes, the links between such medical practioners and the DWP and the private health insurance industry.



from meaction uk

 http://www.meactionuk.org.uk/ME_-_Who_is_attacking_whom.htm


ME: who is attacking whom?

Eileen Marshall Margaret Williams

5th March 2005


Following various postings about Dr Peter Manu’s recent book, there have been comments on some lists from both patients and clinicians (including one on Co-Cure on 3rd March 2005 from Alan Gurwitt MD) noting that “attacks” on all psychiatrists are inappropriate and insulting. We agree.

We wonder if Gurwitt’s concern was referring to quotations from former psychiatrist John Diamond contained in our submission “More Medical Malfeasance” (published on Co-Cure on 2nd March 2005) in which Diamond addressed the issue of cruelty by psychiatrists, even though Diamond was at pains to state: “I do not mean to say that all psychiatrists are cruel”.

Gurwitt himself referred to the harm he believes Manu to have caused and as Gurwitt also noted: “Questions can be raised about certain well-known – perhaps infamous—psychiatrists but it is destructive to paint them all with the same brush …many psychiatrists are poorly informed and misinformed but they are not evil by nature”.


Indeed not, but we would suggest that (i) before pronouncing on ME/ICD-CFS patients, practising physicians in all medical disciplines (including psychiatry) have a duty to keep themselves up-to-date with current medical knowledge so that they are not “poorly informed” and (ii) it is the work of a small group of “infamous” psychiatrists whose disproportionate influence is relied upon and widely quoted by those in authority (who have power over ME sufferers) that brings “infamy” upon the entire discipline of psychiatry.


Neither of these situations is the fault of any patient.


The time has surely come for non-“infamous” psychiatrists who do not wish to be painted with the same brush to ask themselves why they do not unite and speak out against their “infamous” colleagues.


It is a matter of record that in relation to ME/ICD-CFS, most of the “attacks” are on patients and have come from doctors, including psychiatrists; indeed, Professor Michael Sharpe (now of Edinburgh) teaches about ME/ICD-CFS that “Those who cannot be fitted into a scheme of objective bodily illness yet refuse to be placed into and accept the stigma of mental illness remain the undeserving sick of our society and health service” (ref: ME: what do we know (real illness or all in the mind?): October 1999: University of Strathclyde). Does this not constitute an “attack” on those with ME/ICD-CFS, not only on patients’ quality of life but on their very right to life?

It may be worth briefly reconsidering how doctors have effectively “attacked” those with ME/ICD-CFS.


ME/ICD-CFS sufferers are not “malingerers”: they cannot be malingerers because ME is not classified by the World Health Organisation as a mental disorder, yet on 17th May 1995 at a symposium entitled “Occupational Health Issues for Employers” held at the London Business School, ME was described as “the malingerer’s excuse”. Speakers included psychiatrist Simon Wessely (who spoke on the “myths” of ME); psychiatrist Michael Sharpe (who spoke about cognitive behavioural therapy for ME/CFS) and Trudie Chalder (close colleague and co-author of Wessely who spoke about “selling the treatment to the patient”). Also present was Dr John LoCascio, Vice President of the largest disability insurer UNUM (known for its view that ME/CFS is “neurosis with a new banner” as set out in UNUM’s “CFS Management Plan”, 4th April 1995).


Six years later, on 6th-8th November 2001, a collection of influential people from the UK, Australia, the US and Canada attended a conference held at Woodstock, Oxford; the title of the conference was “Malingering and Illness Deception Meeting”.

Participants included Professor Mansel Aylward (then medical director of the UK Department for Work and Pensions); Dr Christopher Bass (a psychiatrist previously of Kings College Hospital, who has published on ME/CFS and whose articles support the “Wessely School” model of ME/CFS); Professor Anthony David from the Institute of Psychiatry, who has co-authored with Wessely on ME/CFS); Professor (then Dr) Michael Sharpe, well known for his “attacks” upon the ME/CFS community and for his close association with the medical insurance industry); Professor Simon Wessely (“infamous” for his belief that ME is nothing but dysfunctional thinking by those who aberrantly believe they suffer from it) and psychiatrist Dr Peter White from St Bartholomew’s Hospital, London (likewise known for his close association with the medical insurance company). Two other notable participants were Mrs Diana Brahams (known for her active membership of HealthWatch) and Dr John LoCascio from UNUMProvident.



At an International Congress on Somatoform Disorders – New Approaches to Classification and Treatment held on 21st-24th February 2002 in Marburg, Germany (sponsored by the drug companies Novartis and Pfizer), Simon Wessely gave the Keynote Lecture (“The chronic fatigue syndrome and the ‘S’ word”); Michael Sharpe’s topic was “Management of somatic disorders in primary care”; Peter White’s topic was “Studies of biopsychosocial factors in two alleged somatoform disorders” and Trudie Chalder’s topic was “Treatment of chronic fatigue syndrome”.



Bearing in mind the volume of published evidence of multi-system organic dysfunction that since 1934 has been known to exist in ME/ICD-CFS, do such blatant, repeated and deliberate misrepresentations of the facts not amount to “attacks” upon those with this disorder?



Is it not bizarre that so much credible and available evidence is so consistently disregarded or dismissed and that on the diktat of these psychiatrists state benefits necessary for basic survival are denied to those with this disorder? Does this not constitute an “attack” upon severely sick people?



Because this is an important issue, we provide specific illustrations of “attacks” upon ME/ICD-CFS patients by doctors to whom those patients turned for help.





In 1989, when the UK charity ME Action Campaign (now “Action for ME”) represented those with ME as distinct from those with chronic fatigue, its’ journal Interaction carried the results of 1500 professionally conducted questionnaires that had been sent out and some of the responses are provided here.



Comments of doctors to ME patients:



* “Throw away your crutches – it’s your head that needs them, not your legs”
* “Women of your age imagine aches and pains – are you sure you’re not attention-seeking?”
* “I’m not prepared to do any tests, they cost money”
* “Shut up and sit down”
* “You are a menace to society – a pest. I wish you’d take yourself away from me”
* “You middle class women have nothing else to worry about”
* “Its one of those thing you silly young women get”
* “Hypochondriac, menopausal, you have the audacity to come here and demand treatment for this self-diagnosed illness which does not exist”
* “Stop feeling sorry for yourself – I have patients with real illnesses, patients who are dying from cancer”
* “ME is a malingerer’s meal ticket”
* “Your inability to walk is in your mind”
* “I’m not going to further your career of twenty years of being ill”
* “Nothing at all wrong with this woman – Put her on valium” (to GP from Consultant).



Comments of ME patients about their doctors:



* “I was told I was lazy and laughed at”
* “(he said) the illness was a load of trollop, he laughed me out of the surgery”
* “(he) laughed when I told him I could only visit him if I felt fit enough”
* “I was called ‘stupid’ and shouted at on more occasions than I care to mention…one neurologist said he ‘couldn’t care less’ whether I ever got better”
* “I was told I was a disgrace”
* “My illness started with a sudden, severe collapse. The doctor said that it was due to ‘attention seeking’”
* “(I was) told that I was a nutter”
* (I was) told I was selfish and introverted and it was nothing but hysteria”
* “(the) doctors said to me ‘if you go on like this you will be struck off the register’”
* “(the doctor) said my symptoms / signs ‘didn’t exist’”
* “It was suggested ‘a good man’ was all I needed”.



That same year, a severely affected female patient was informed by her GP that ME “is a condition developed by the patient for what they can get out of it”.



In 1991, researchers at Southampton University asked 140 local GPs to refer patients with ME/CFS to take part in a trial; only 60 bothered to reply, of which 40 made it clear that they did not believe in ME/CFS (“GP doubts hamper new treatment”: GP Magazine, 6th April 1991).



In April 1994, GP magazine carried an article entitled “GPs despise the ME generation” and the article stated that nationwide, only 10 to 30% of GPs believe that ME is a real disease.



Perhaps GPs are not entirely to blame for such an attitude when the information digest that is so readily provided for them in the medical trade publications (such as Pulse, GP and Doctor) and the BMJ is provided virtually exclusively by the “infamous” psychiatrists.



In Doctor magazine on 12th January 1995 in the section entitled “Bluffer’s Guide”, Dr Douglas Carnall wrote about chronic fatigue as “Yesteryear’s neurasthenias: Investigations have their own hazards – it is possible to reinforce the patient’s somatising behaviour. This has all kinds of risks, especially that the patient will run off to join a self-help group, membership of which is itself an adverse prognostic factor. Modern bluffers prefer the term chronic fatigue syndrome. If they insist on a physical diagnosis tell them chronic fatigue syndrome is a complex disorder in which multiple biopsychosocial factors are mediated via the anterior hypothalamus – in other words, it’s all in the mind”.



On 5th May 1996, in the section on America (Foreign News), the Sunday Express published a piece by Jonathan Miller, who stated: “the absolutely most fashionable disease here is Chronic Fatigue Syndrome – CFS for the initiated”. The headline was

“Chronic Bandwagon Disease”.



Despite considerable advances in biomedical understanding of the disorder, ten years after the ME Action Campaign questionnaire, professional perception had not changed much.



On 18th February 1999, Adrian Furnham, Professor of Psychology at University College, London, wrote an article in the Daily Telegraph in which he suggested that there was “a wealth of conditions that can be fashionable excuses for lack of success” in which he included ME/CFS. In the ME Association’s Newsletter (Perspectives, Summer 1999, page 3), Dr Charles Shepherd, the Association’s Medical Adviser wrote: “Professor Furnham’s view that ME/CFS is nothing more than a fashionable medical excuse for people who are otherwise lazy, mediocre or incompetent is not only insulting, but totally inconsistent with published scientific findings”. Dr Shepherd made a formal complaint to Disciplinary Committee of the British Psychological Society, claiming that Professor Furnham had broken the Society’s Code of Conduct given that their Code of Conduct required that members “shall value and have respect for scientific evidence when making public statements”. After four months, the Investigatory Committee of the BPS concluded that Professor Furnham had not committed any form of professional misconduct.



Commenting on a paper in the Journal of the Royal Society of Medicine about children with ME/CFS, Dr Keith Hopcroft, a GP in Basildon, Essex wrote in Update, 6th April 2000, page 522: “In more than three-quarters of a group of children with chronic fatigue syndrome, the illness began at the start of the school year. An adult version of this – recurrent brief chronic fatigue—affects me every Monday morning”.



On 28th August that same year, Dr Hopcroft wrote in the Scotsman: “There is great debate among the medical profession and in the media about what causes CFS and how it should be treated. Those who specialise in this area reckon it’s futile to look for the cause”.



In 2001, Dr Tony Copperfield (known to be a pseudonym of a GP in Essex who writes a regular column in Doctor magazine) posed a question: “What would be your initial response to a patient presenting with self-diagnosed ME?” Out of four possible answers, the correct one was stated to be: “For God’s sake pull yourself together, you piece of pond life”.



On 23rd March 2001 in an article entitled “Top 100: the many faces of fatigue”, GP magazine afforded Dr Marko Bogdanovic (research registrar, Merton College, Oxford, and a Wessely School psychiatrist) a platform to “attack” ME/ICD-CFS sufferers: “The provision of disability services and benefit payments is controversial because illness beliefs may be reinforced (and) services and benefits constitute a secondary gain”.



Also in 2001 on 20th October, in the section called “Choices for the new generation of GPs”, Pulse magazine (sent to GPs and to hospital libraries) carried a prominent feature giving three GPs’ views on what was described as a “tricky situation”. The subject for discussion was: “ME patient with litigation history demands inappropriate therapy”. The response by Dr Mary Church (real name), a full-time Principal in a GP practice near Glasgow at 64, Victoria Street, Blantyre, Lanarkshire, Scotland, was particularly disturbing: “Never let patients know you think ME doesn’t exist and is a disease of malingerers. Frustrating though it is…certain members of the profession are true believers. Never advise an ME patient to make a review appointment. At the end of the consultation, I say goodbye, not au revoir. Always refer ME patients to a local expert. It’s a wonderful way of passing the buck”. Almost more disturbing than her response is the fact that Dr Mary Church is a member of the British Medical Association’s Medical Ethics Committee.



As recently as this month, Dr Mike Jones (Senior Physician at Edinburgh International Health Centre, Musselburgh and Associate Specialist, Regional Infectious Diseases Unit, Western General Hospital, Crewe Road, Edinburgh) states: “In at least some cases of CFS, and possibly most, there are psychological factors. Occasionally CFS is a clear benefit to the CFS patient. Rational discussion is often hampered by polarisation by those who dislike psychological hypotheses of causation into ‘believers’ and ‘non-believers’. Believers can then dismiss the views that they do not like on the grounds that the person who holds those views ‘does not believe in ME’”.



The option for medical practitioners of whether or not to “believe” in ME no longer exists, as was made plain by the Chief Medical Officer himself in January 2002. Three years later, this seems to have escaped Dr Mike Jones.



The tradition of shameful diatribes and invective against ME sufferers still abounds. Doctors seem to vie amongst themselves to produce jibes at ME sufferers’ expense. Why do they not jibe with equal disdain and offence at those with other classified chronic conditions such as lupus or multiple sclerosis?



It is abhorrent that vulnerable and desperate patients should still be forced to justify their illness because of ill-informed but influential doctors who so persistently dismiss the reality and severity of ME/ICD-CFS.



The incidence of psychiatric co-morbidity in ME/ICD-CFS has been greatly over-emphasised: a study in the Journal of the Royal Society of Medicine (2000:93:310-312) found that of patients in a tertiary referral centre who had received a psychiatric diagnosis, 68% had been misdiagnosed, with no evidence of past or current psychiatric illness.



This refers to just one study: if the findings of such a high percentage of psychiatric misdiagnosis in ME/ICD-CFS were to be investigated nationwide, the results might be phenomenal.



Until such a study is undertaken (and vested interests may ensure that it will never be undertaken), does the now nationwide compulsory but inappropriate psychiatric management regime not constitute an “attack” on physically sick people, especially in the light of the recent study by Black, O’Connor and McCully (Dyn Med 2005: March 3: 4(1):3)?



This study aimed to sustain an increase in daily physical activity in ME/ICD-CFS patients for four weeks and to assess the effects on fatigue, muscle pain and mood. At baseline, patients reported significantly higher fatigue and muscle pain intensity but patients and controls did not differ in overall mood. Subjects increased their daily activity over the four week period but with the increased activity, mood and muscle pain worsened in patients. The study concluded that the results suggest that a daily “activity limit” may exist in this population.



This being so, is it acceptable for the national programme to continue to “attack” those with ME/ICD-CFS by forcing them to undergo damaging psychiatric interventions, the only NHS alternative being no help or support whatever?



In the light of the published evidence, such denigratory “attacks” by doctors on those with ME/ICD-CFS are a travesty, so let there not be too much sympathy for the “infamous” psychiatrists who are responsible for this travesty.



Many of the perjorative “attacks” on ME/ICD-CFS patients would be dispelled if patients were permitted to undergo at least some of the appropriate testing that is now available, which although not definitive, does confirm the organic pathoaetiology of ME/ICD-CFS and would filter out the majority with a primary psychiatric disorder who are currently included within the heterogeneous label “CFS/ME” that was created by the “infamous” psychiatrists.

May I offer a heartfelt thanks for how articulate and unnervingly accurate Jane's piece is in detailing how it is to have ME/CFS. I had a flu-like trigger but came down gradually over the next year while I was in London and it took 18 months and several doctors before I realised what it was and got properly diagnosed. I too never know how to answer the "are you feeling better" as people so want you to answer with a positive. Alas for many, the answer is "not really" or "same old same old".

... really. I had CFS diagnosed after undiagnosed glandular fever. The road back was long but I'm there now, six years later (except when I get a viral infection, which can wipe me out). It took three years before I felt well and five years before I felt anything like normal. I kept hold of life and managed to keep a job (despite a lot of sick leave) and even to get promoted, 2 years ago. So there is an end to the tunnel!