# LIFESTYLE ILLNESSES - I'm so ANGRY and frustrated



## Susan Purry (Nov 6, 2001)

Iï¿½ve just been watching the lunchtime BBC news here in the UK.It leaves me so angry and frustrated.














I thought that with the publication of the Report of the CFS/ME Working Group (a government-commissioned report), which reported that CFS/M.E is a real illness,


> quote: *6.1 Recognition and definition of the illness*The NHS and healthcare professionals should recognise CFS/ME as a chronic illness that, despite uncertain aetiology, can affect people of all ages to varying degrees, and in many cases substantially. http://www.doh.gov.uk/cmo/cfsmereport/recommend.htm


that doctors across the country would start changing their attitudes about CFS/M.EIt seems not. On the news today there was a feature about so called ï¿½Lifestyle Illnessesï¿½ ï¿½ conditions doctors want reclassified from ï¿½diseaseï¿½ to ï¿½lifestyle illnessï¿½. They want them reclassified because they believe that these conditions are *ï¿½natural processesï¿½, that are ï¿½not diseasesï¿½, and that the people they affect have ï¿½nothing much wrong with themï¿½, ï¿½do not require treatmentï¿½ and are the ï¿½walking wellï¿½.*Such conditions include the menopause, infertility, obesity, halitosis, baldness and depression.







*ANDï¿½what has got me really angry and frustratedï¿½ CHRONIC FATIGUE SYNDROME. *







This illustrates that many, many doctors are not taking account of medical research and the plain facts. Namely, that whilst Chronic Fatigue Syndrome (also known as M.E. ï¿½ myalgic encephalopathy) is not an organic disease, it is certainly an illness, as is shown by the clear involvement of the immune and endocrine systems. *Would you say of somebody with an overactive immune system and a blunted hypothalamic-pituatry-adrenal axis ï¿½thereï¿½s nothing much wrong with themï¿½ they are the walking wellï¿½ CFS is a natural processï¿½ it is a lifestyle illnessï¿½?* I THINK NOT. I understand that CFS/M.E is not a disease. But is not a lifestyle illness.Here are some links for you:News report: http://news.bbc.co.uk/hi/english/health/ne...000/1920768.stm Report of the CFS/ME Working Group: http://www.doh.gov.uk/cmo/cfsmereport/contents.htm News report on CFS/ME which states that "Doctors must recognise M.E. as a genuine illness and bring it "in from the wilderness", experts have said." http://news.bbc.co.uk/hi/english/health/ne...000/1755070.stm


----------



## Nikki (Jul 11, 2000)

I posted tp the other forum! Here is what i said! http://www.ibsgroup.org/cgi-local/ubbcgi/u...t=000515#000001


----------



## trbell (Nov 1, 2000)

maybe we should do something about this?tom


----------



## LoriAnn (Jan 31, 2002)

I underatand the frustration very well, the longer you live with this, the more frustrating it becomes. But no one should accept that this is not a DISEASE. SOMEDAY IT WILL BE FOUND AND TREATED. Just because no one has tried very hard to find the cause or cure doesn't mean it isn't possible. But if we accept that it isn't an organic problem, if we stop fighting for research and action, we will all be labeled and shelved.Its no different than stomach ulcers, once believed to be caused by outside influences (smoking, alcohol, stress), they NOW know it is caused by bacteria, but only because someone kept looking. We must keep the faith and remind others, often that we are living beings who want and deserve a normal life.On the other had, it will probably get the attention and funding it deserves when it starts costing the Gov't serious dollars in loses and pensions. Get mad, stay mad. "The squeaky wheel gets the grease"Lori


----------



## Susan Purry (Nov 6, 2001)

Background to the survey on 'non-diseases':


> quote:What do you think is a non-disease? Pros and cons of medicalisation". [British Medical Journal]It is signed by Simon Wessely, Professor. Only 570 out of more than 30,000doctors voted on a list of some 200 so-called non-diseases drawn up by theBMJ. Only 72 doctors voted for CFS/ME, while 251 voted for ageing. Wesselyhas chosen to highlight CFS/ME in his letter and, of course, the presspicked it up.I feel truly sorry for the Chief Medical Officer. He is trying to do hisbest and is thwarted at every turn. It is extraordinary that this man andhis group of followers, colloquially known as the Wessely school, have beenallowed to dominate all debate on ME for 15 years. They have unquestionablybeen responsible16 Apr 2002 : Column 895for a relentless and sustained attack on the credibility of an increasingnumber of severely ill patients, dismissing and trivialising theirsuffering.As Nero fiddled while Rome burned, so the Wessely school fiddles the factswhile people suffer and die. When Wessely's work is legitimately criticisedby colleagues and his methodological flaws pointed out, he blames his peerreviewers for allowing his own errors to be published. Wessely isresponsible for the accuracy, honesty, impartiality, quality and scientificintegrity of the research which he has published.There are many documented instances in which he is in direct conflict withother competent medical opinion. His tactics include manipulation,distortion, invention, misquotation, suppression, exploiting publicignorance and deliberately constructing his presentations to fit hisaudience. Rather than his having orchestrated a campaign against patientsand their credibility, he claims it is patients who are orchestrating acampaign of vilification against him.Professor Wessely seems to have taken it upon himself to reclassify ME as amental disorder in the WHO Guide to Mental Health in Primary Care in hiscapacity as a member of the UK WHO Collaborating Centre for Research andTraining for Mental Health. He has disingenuously amalgamated his owndefinition of chronic fatigue syndrome with ME by stating that ME may bereferred to as CFS and is thus, he claims, a mental disorder.The report concedes that there is huge confusion surrounding terminology. Inreality it is simple. In 1992, the WHO included the term CFS as one by whichME is sometimes known, and indeed many international researchers now referto ME as CFS. The patients whom they are studying resemble those withneurological illness. There is a long established acceptance that suchpatients are severely physically ill. However, since 1991, Wessely and hiscolleagues have been responsible for producing their own criteria for CFS,known as the Oxford criteria. They dropped all reference to physical signs.Physical symptoms suddenly became behavioural in origin as opposed toorganic.Simon Wessely and, in particular, Michael Sharpe, Anthony David, and PeterWhite-all psychiatrists-proceeded systematically to flood the UK literaturewith their own beliefs about the non-existence of ME. They commandeeredmedical journals and the media. They became self-designated experts inmedically unexplained symptoms such as ME, Gulf War syndrome, and multiplechemical sensitivity. They have received disproportionate funding, amountingto over ï¿½5 million, for research into their own beliefs to the exclusion ofvirtually all research into organic causes.Their influence pervades every aspect of ME sufferers' lives, includingtheir ability to obtain social security and private medical insurancebenefits, social services assistance and home tuition for children.Tragically, children with ME have suffered disproportionately. As I havealready explained, the prevailing perception of the illness is that it is16 Apr 2002 : Column 896bio-psychosocial, whatever that means.


http://www.publications.parliament.uk/pa/ld199900/ldhans rd/pdvn/lds02/text/20416-19.htm#20416-19_unstar0[/URL]That was taken from a transcript of a discussion in the House of Lords (in Britain) on ME/CFSs.


----------



## trbell (Nov 1, 2000)

curiosly enough, Wessely doesn't seem to realize it but he is also generating a lot of public awarenesstom


----------



## Susan Purry (Nov 6, 2001)

> quote:curiosly enough, Wessely doesn't seem to realize it but he is also generating a lot of public awareness





> quote: exploiting publicignorance


Considering public ignorance, how much of what Wessely's generation of public awareness results in POSITIVE, ACCURATE awareness? People can only be aware with education. If Wessely is educating them, what hope is there? It does worry me!


----------

