M.E. and CFS THE REAL FACTS THAT NO PSYCHIATRIST CAN DENY

[Gerwyn]

Here beginneth the lesson Psychiatrists who Believe the illness to be psychological take note

ME / ICD-CFS is a serious, disabling and chronic organic (ie. physical not mental) disorder: 80% of patients do not get better. (7) According to US statistics provided by the Centres for Disease Control (CDC), only 4% of patients had full remission (not recovery) at 24 months. (8)

International expert Daniel Peterson is on record as stating about ME / ICD-CFS:

"In my experience, (it) is one of the most disabling diseases that I care for, far exceeding HIV disease except for the terminal stages". (9)

American researchers found that the quality of life is particularly and uniquely disrupted in ME / ICD-CFS and that all participants related profound and multiple losses, including loss of jobs, relationships, financial security, future plans, daily routines, hobbies, stamina and spontaneity. Activity was reduced to basic survival needs for some subjects. The researchers found that the extent of the losses experienced by sufferers was devastating, both in number and intensity. (10)

Australian researchers found that patients with this disorder had more dysfunction than those with multiple sclerosis, and that in ME / ICD-CFS the degree of impairment is more extreme than in end-stage renal disease and heart disease, and that only in terminally ill cancer and stroke patients was the sickness impact profile (SIP) greater than in ME /ICD-CFS. (11)


next installment soon

 

[Gerwyn]

INSTALLMENT NUMBER 2

ohn Dwyer, Professor of Medicine at the University of New South Wales, Australia, states that his team has seen ME / ICD-CFS stimulated by vaccination and that they have seen it both with vaccinations such as those for influenza and also with the use of material which is not live, such as that in a tetanus toxoid injection. (77),(78)

The disorder is known sometimes to occur or worsen after anaesthetics, (79),(80),(81) and to be related to some infections (both viral and bacterial). There is a considerable literature on the viral aspects of the disorder, the most implicated viruses being Coxsackie B (82),(83) and Human Herpes Virus 6 (HHV6). (84),(85) HHV-6 has been found in patients suffering from ME / ICD-CFS and also in MS; it has also been linked to other autoimmune conditions such as systemic lupus erythematosus (SLE or lupus).



Physical signs found in ME

In cases of severe ME there are definite physical signs indicative of physical illness and not of abnormal illness behaviour. Some of these signs are often present in less severely affected cases but in the UK are dismissed or trivialised in order to comply with the currently-favoured psychiatric definition of CFS. Not all patients have all signs, but throughout the ME literature, the following are common in the sickest patients.

Observable signs include a typically swinging low-grade temperature, nystagmus; sluggish visual accommodation; abnormality of vestibular function with a positive Romberg test; abnormal tandem or augmented tandem stance; abnormal gait; hand tremor; incoordination; cogwheel movement of the leg on testing; muscular twitching or fasciculation; hyper-reflexia without clonus; facial vasculoid rash; vascular demarcation which can cross dermatomes with evidence of Raynaud's syndrome and / or vasculitis; (86) mouth ulcers; (87),(88) hair loss; (89),(90),(91),(92),(93) a labile blood pressure (sometimes as low as 84/48 in an adult at rest); flattened or even inverted T-waves on 24 hour Holter monitoring (94) (a standard 12 lead ECG is usually normal); orthostatic tachycardia; shortness of breath (patients show significant reduction in all lung function parameters tested); (95) abnormal glucose tolerance curves; liver involvement (96),(97),(98),(99),(100) (an enlarged liver or spleen may not be looked for in ME, so missed) and destruction of fingerprints: (atrophy of fingerprints is due to perilymphocytic vasculitis and vacuolisation of fibroblasts (101)).

In his Testimony before the FDA Scientific Advisory Committee on 18th February 1993, Dr Paul Cheney (Professor of Medicine at Capital University; Medical Director of the Cheney Clinic, North Carolina and one of the world's leading exponents on ME /ICD-CFS) testified as follows:

" I have evaluated over 2,500 cases. At best, it is a prolonged post-viral syndrome with slow recovery. At worst, it is a nightmare of increasing disability with both physical and neurocognitive components. The worst cases have both an MS-like and an AIDS-like clinical appearance. We have lost five cases in the last six months. The most difficult thing to treat is the severe pain. Half have abnormal MRI scans. 80% have abnormal SPECT scans. 95% have abnormal cognitive-evoked EEG brain maps. Most have abnormal neurological examination. 40% have impaired cutaneous skin test responses to multiple antigens. Most have
evidence of T-cell activation. 80% have evidence of an up-regulated 2-5A antiviral pathway. 80% of cases are unable to work or attend school. We admit regularly to hospital with an inability to care for self".

People with ME are permanently excluded from being blood donors. (102)

 

[Sing]

Amen.

Thank you, Gerwyn, for pulling all this together. I am always grateful for the efforts people make here, when they are sick. I know how costly the energy expenditure is, and I also know the motivation, the desire to join together with others and use what we know and can learn. Some day we will succeed in getting to the top of the mountain too, where we can understand and take the right measures to improve our health and well being.

Sing

 

[gracenote]

Gerwyn,

This is great. Can you give us a link with the references?

 

[Gerwyn]

Gerwyn,

This is great. Can you give us a link with the references?

My pleasure

3) Viral Isolation from Brain in Myalgic Encephalomyelitis (A Case Report). John Richardson Journal of CFS 2001:9: (3-4):15-19

(94) Cardiac involvement in patients with CFS as documented with Holter monitor and biopsy data AM Lerner et al Infectious Diseases in Clinical Practice 1997:6:327-333

(95) Lung function test findings in patients with chronic fatigue syndrome, De Lorenzo et al. Australia & New Zealand Journal of Medicine. 1996:26:4:563-564

(96) Icelandic Disease (Benign Myalgic Encephalomyelitis or Royal Free Disease). AM Ramsay EG Dowsett et al. BMJ May 1977:1350

(97) The 'chronic mononucleosis' syndromes. Komaroff AL Hosp Pract 1987 (May):71-75

(98) Chronic Fatigue Syndrome in Northern Nevada. SA Daugherty et al Rev Inf Dis 1991:13: S39-S44

(99) Chronic Fatigue Syndrome and Depression: Biological Differentiation and Treatment CM Jorge, PJ Goodnick. Psychiatric Annals 1997:27:5:365-386

(100) Symptom patterns in long duration chronic fatigue syndrome. F. Friedberg et al J Psychosom Res 2000:48:59-68

(101) Presentation by Dr Paul Cheney. CFS National Consensus Conference, Sydney, Australia,1995

(102) Guidelines for the Blood Transfusion Service in the UK 1989:5.42 / 5.44 / 5.410; Department of Health; pub: HMSO

 

[maryb]

Amen.

Thank you, Gerwyn, for pulling all this together. I am always grateful for the efforts people make here, when they are sick. I know how costly the energy expenditure is, and I also know the motivation, the desire to join together with others and use what we know and can learn. Some day we will succeed in getting to the top of the mountain too, where we can understand and take the right measures to improve our health and well being.

Sing

I couldn't have put it better, thank you so much for all this Gerwyn, very saddening to read too even though its only what we all know.

 

[jace]

Gerwyn thank you. That is such a useful piece of work. Is it ok if I print it to give to a couple of doctors I know?

To make it complete, we still need refs 7 - 11, and 77 - 93, if that is at all possible.

Thank you again for your work. Respect.

 

[bluebell]

My doctor has noted at least 6/10ths of these - and considers me completely well (with enlarged liver, Raynaud's, passing out, tremor, twitching, pallor, breathlessness...). I especially like the mention of lung involvement. I saw the X-rays she took after I complained of a constant, deep wheeze or noise in one lung - something is going on there. She said it was asthma (which I don't have), or the way I was standing. I am going to print it this out for her. Perhaps a freshly-sharpened Occam's Razor can hold the two pages together;-). Thanks, G.

 

[Trooper]

Thanks Gerwyn, I will keep these facts bookmarked to use in future letter writing : )

 

[Gerwyn]

Gerwyn thank you. That is such a useful piece of work. Is it ok if I print it to give to a couple of doctors I know?

To make it complete, we still need refs 7 - 11, and 77 - 93, if that is at all possible.

Thank you again for your work. Respect.

Hi Jace,
Here they are

(7) Presentation to the Scottish Parliament on 4th April 2001 by Dr A. Chaudhuri, Senior Clinical Lecturer in Neurology, University of Glasgow

(8) US CDC CFS Programme Update, 29th August 2001

(9) Introduction to Research and Clinical Conference. Daniel L Peterson. Journal of CFS 1995: 1:3 4:123 125 (Previously presented at the AACFS International Research and Clinical Conference on CFS held at Fort Lauderdale, Florida, 7th1Oth October 1994, co sponsored by the National Institutes of Health and the Centres for Disease Control)

(10) The Quality of Life of Patients with Chronic Fatigue Syndrome. JS Anderson, CE Ferrans J Nervous and Mental Diseases 1997:185:6:359 367

(11) Quality of Life in Chronic Fatigue Syndrome. R Schweitzer et al Soc Sci Med 1995:41:10: 1367 1372

77) personal communication (10 February 1992) from John Dwyer, Professor of Medicine, University of New South Wales, Australia

(78) Is CFS linked to Vaccinations? Charles Shepherd. The CFS Research Review 2001:2:1:6-8

(79) New light on the causes and management of postviral fatigue syndrome. Charles Shepherd. Modem Medicine 1988:287

(80) Environmental Medicine in Clinical Practice. H Anthony, S Birtwhistle, K Eaton, J Maberly. pub: BSAENM 1997, ISBN 0-9523397-2-2

(81) CFIDS and Anaesthesia: what are the risks? EA Crean. CFIDS Chronicle Winter (Jan) 2000:11-13

(82) Persistence of enteroviral RNA in Chronic Fatigue Syndrome is associated with the abnormal production of equal amounts of positive and negative strands of enteroviral RNA. L Cunningham, NE Bowles et al J Gen Virol 1990:71:6:1399-1402

(83) Evidence for Enteroviral Persistence in Humans. DN Galbraith et al J Gen Virol 1997:78:307-312

(84) Frequent HHV 6 reactivation in multiple sclerosis (MS) and chronic fatigue syndrome (CFS). DV Ablashi et al J Clin Virol 2000: (3):16:179-191

(85) Evidence of Active HHV6 Infection and its Correlation with RNase L Low Molecular Weight Protein (37 kDa) in CFS Patients. D Ablashi, S Levine et al Presented at The Alison Hunter Third International Clinical and Scientific Conference, lst 2nd Dec 2001, Sydney, Australia

(86) The Clinical and Scientific Basis of Myalgic Encephalomyelitis Chronic Fatigue Syndrome pp. 42, 62, 70, 73, 87, 89, 91, 268, 376, 427 430. ed: BM Hyde, J Goldstein, P Levine. pub: The Nightingale Research Foundation, Ottawa 1992

(87) Outbreak at The Royal Free. ED Acheson. Lancet 20 August 1955:304-305

(88) M.E. Post Viral Fatigue Syndrome. Dr Anne Macintyre. Unwin Hyman 1989

(89) Chronic Fatigue and Immune Dysfunction Syndrome: a Patient Guide. CFIDS Assn. 1989

(90) The Disease of a Thousand Names. DS Bell. Pollard Publications, New York 1991

(91) How do 1 diagnose a patient with CFS? J. Goldstein. In: The Clinical and Scientific Basis of ME / CFS ed: BM Hyde, J Goldstein, P Levine. pub: The Nightingale Research Foundation, Ottawa, 1992

(92) Chronic Fatigue Syndrome: evaluation of a 30 criteria score and correlation with immune activation. Hilgers A, Frank J. JCFS 1996:2:4:35-47

(93) Viral Isolation from Brain in Myalgic Encephalomyelitis (A Case Report). John Richardson Journal of CFS 2001:9: (3-4):15-19

(94) Cardiac involvement in patients with CFS as documented with Holter monitor and biopsy data AM Lerner et al Infectious Diseases in Clinical Practice 1997:6:327-333

(95) Lung function test findings i

 

[Min]

Thank you Gerwyn ,that's brilliant and like others I am bookmarking it for reference.