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MEitis? A SLENDER STRING TO OUR BOW

By Gurli Bagnall, 24 October, 2004

If we give up our power to the authorities.., we submit ourselves to the domination of others over us, without control over our destiny, it drives us towards sickness, aging, death. ("The Medical Mafia" Guylaine Lanctot, M.D.)

Recently, an officially commissioned US study of all the evidence gathered on the Gulf War Syndrome (GWS), resulted in the confirmation that the Gulf War Illnesses are indeed real and chemically induced. The report can be heard on BBC:

http://www.bbc.co.uk/radio4/today/listenagain/ram/today1_gulf_20041016.ram

This will not please self professed experts on GW Illnesses in the UK who are at pains to persuade the establishment and the public that those most affected are not physically ill at all. ".doctors have discovered that it is most likely to affect younger people, those from lower socio-economic backgrounds.. 'Psychological problems are a major part of war,' says Professor Simon Wessely, director of the Gulf War research Unit at King's College London."(1)

"The rates for somatoform disorders are three times greater in disabled Gulf veterans than they are in disabled non-Gulf veterans." (2)

"Dr. Wessely's last foray into the public eye came last year, when he was associated with the controversial report dismissing ME as having no physical basis..Let us hope he makes no similar mistake about Gulf War Syndrome being a malingerer's charter." (3)

"Sickness is no longer a personal matter: it has become social, political, bureaucratic..All the actors involved in this drama have their own perspectives.[such as] the governments with avoiding compensation at all costs. So one would expect the Ministry of Defence to deny the existence of Gulf War Syndrome and it does, operating on the simple basis of 'no bug, no dosh'." (4)

Medical manipulation for personal gain is not new, and abuse patients follows as night follows day. In his book "Emerging Viruses, Aids and Ebola. Nature, Accident or Intentional?" Leonard G. Horowitz referred to the 1931 cancer research programme in Puerto Rica.

"Dr. Cornelius Rhodes carried out the experiment in which thirteen Puerto Ricans died 'after being purposely infected with cancer'. In a letter to a colleague, obtained by the Puerto Rican National Party, Rhodes wrote:

"'.the Porto Ricans (sic) are beyond doubt the dirtiest, laziest, most degenerate and thievish race of men ever inhabiting this sphere. It makes you sick to inhabit the same island with them..What the island needs is not public health work, but a tidal wave or something to totally exterminate the population..I have done my best to further the process of extermination by killing off eight and transplanting cancer into several more..The matter of consideration for the patients' welfare plays no role here - in fact, all physicians take delight in the abuse and torture.."

Horowitz commented: "Rhodes, rather than being held accountable for his crimes, was later awarded the Legion of Merit and then appointed to the staff of the US Atomic Energy Commission."

The contempt Rhodes displayed for those he was happy to use to his own advantage, is something most MEitis sufferers understand only too well. Given the scientific findings which are routinely ignored by the self proclaimed ME "experts", the concern for patient welfare is no more than that which Rhodes afforded his "laboratory rats".

In the document "Concepts of Accountability" written by Emeritus Professor Malcolm Hooper and his research team, reference is made to a paper entitled "The Legend of Camelford: medical consequences of a water pollution accident". In 1988, 20 tonnes of aluminium sulphate were accidentlally pumped into the drinking water supplies of Camelford (Cornwell). Dr. Simon Wessely (now a professor) and his colleague expressed the view that the symptoms of which the residents complained after the event, were simply normal bodily sensations and that the behaviour was caused by anxiety about the state of the environment and chemical toxin. Such fears, they claimed, "often appear in controversial fields such as environmental medicine and clinical ecology." (5) In commenting on the paper, Bernard Dixon wrote: "mass hysteria was largely responsible for the furore." (6)

One must surely question the ethics, if not the intelligence, of the authors when seven people died, 25,000 suffered serious health effects and 40,000 animals were affected. (7)

Whether it be poisoning as in Camelford or the GWIs, whether it be Myalgic Encephalomyelitis (ME), occurring as a result of chemical exposure or a viral infection, sufferers are routinely told they are not ill - except in their minds. Prejudice is as palpable as a thick, dank miasma, and we see in the current pressure to change the title Myalgic Encephalomyelitis to Myalgic Encephalomyelopathy.

It doesn't sound a big deal and to new comers to the MEitis world, it might even sound feasible, but alas it is not simply a case of pronunciation
-
You say tomAIto and I say tomARto.

In the UK, 1988 also saw a change to the title, MEitis. The psychiatric drive to this end had succeeded and the disease was re-named the chronic fatigue syndrome (CFS). Sufferers quickly learnt that this was an attempt to trivialize them and their suffering, and to label the condition a mental disorder.

After many years of protest, the authorities reluctantly conceded that ground must be given. From then on, the disease was to be known as CFS/ME, but from the perspective of the psychiatric lobby, this presented a problem. While MEitis has been listed as a neurological disease by the WHO International Classification of Diseases for almost 50 years, an underhanded attempt was made to include it under mental disorders as well. Professor Simon Wessely failed to achieve this objective so now the pressure is on to delete MEitis from the official records altogether.

The answer seemed simple. Persuade everyone that at no time during the illness is there any inflammation of the brain and spinal cord(encephalomyelitis), and propose instead that Myalgic Encephalomyelopathy represents the disease better. In a poorly understood condition, MEopathy leaves plenty of leeway for further misrepresentations - it suggests nothing more than something vague and unspecified affecting the central nervous system. And most important, it has no WHO classification at all.

Nevertheless, be it because of the naiveté of some and the deliberate deception of others, the pressure is on for all to accept "opathy".

From a scientific point of view, "opothy" does not hold water. ".in ME there IS evidence of inflammation of the central nervous system (CNS); that is what helps to differentiate ME from other forms of CFS. There are many references in the medical literature to inflammation of the CNS in ME and in ICD-CFS." (8) (Samples of the references are numbers: 9,10,11,12,13)

Without a listing as a neurological disease in the ICD, those who are contemplating laying official complaints against negligent health workers can forget it. This is the only slender string to their bow. This year, I have lived through two near death experiences which occurred because two doctors would not acknowledge that MEitis must be taken into account during examination and treatment. I know that legitimate complaints presented to the Medical Council are nearly always dismissed - the welfare of colleagues taking priority over the welfare of patients. Given the Wessely School influence here in New Zealand, if I had decided to lay official complaints against these two, the neurological classification represents the only chance I would have to succeed.

I recently had the pleasure of watching the filmed version of Laura Hillenbrand's book "Seabiscuit" on DVD. What a mammoth task for an ME sufferer to undertake! Apart from the writing, there was also the research.

Despite her illness, this talented woman has achieved more than most well people achieve in a life time. And there are many like her. They may not be well known, but they are all achievers under the most difficult and painful circumstances. No one with any credibility would label them as inadequate human beings as do those associated with the Wessely School of thought on what they like to call, the chronic fatigue syndrome.

Clement Attlee is recorded as having said: "Democracy means government by discussion but it is only effective if you can stop people from talking." In the MEitis world, there are many who subscribe to that view. Many, indeed, who become quite agitated and angry because those who are affected by the disease, will not bow down under their oppressive yoke.

For MEitis sufferers, CFS is not a diagnosis, it is a character assassination.

References:

1. "The Psychology of war" BBC NEWS. 2003/03/05

2. "The Mental Health of UK Gulf War veterans: phase 2 of a two part cohort study" Wessely et al. BMJ 14 September 2002; 325:576

3. The Guardian, 6 March, 1997

4. New Statesman, 5 February 1999

5. Anthony David, Simon Wessely. Journal of Psychosomatic Research 1995:3995:311:395

6. British Medical Journal, 1995:311 :395

7. "The Politics of Poisoning: the Camelford Aluminium Sulphate Scandal." Douglas Cross. The Ecologist 1990:20:6:228-233)

8. "What is ME? What is CFS? Information for Clinicains and Lawyers.Decmber 2001". M Hooper, M Williams, EP Marshall.

9. "A clinical description of a disease resembling poliomyelitis seen in Adelaide". Pellew RAA. Medical Journal of Australia 1955;42;480-482

10. "A chronic illness characterized by fatigue, neurologic and immunologic disorders". D Buchwald, PR Cheney, DA Ablashi, RC Gallo, AL Komaroff et al. Ann Intern Med 1992:116:103-113

11. "Detection of intracranial abnormalities in patients with chronic fatigue syndrome". RE Schwartz et al. Am J Roentgeneology 1994: 162:935-941

12. "A 56 year old woman with CFS". AL Lomaroff. JAMA 1997: 278:14:1179-1184

13. "Encephalomyelitis resembling benign myalgic encephalomyelitis".AGB Innes. Lancet 1970: 969-971




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