video: Medical Hate Speech against ME patients -UK

[leelaplay]

Jan van Roijen to CO-CURE today

[sb: I haven't seen the video. And I can't attest to the veracity of the quotes. But if even one of the samples below is accurate, it might be a depressing/infuriating experience to watch the video and see all the asinine quotes.]

A simple, but moving video (text only); specially in
the light of the 4- to 5000 biomedical papers, in
which severe abnormalities are demonstrated and
not to forget the finding of a new retrovirus:
XMRV.

It is framed with beautiful music with quotes from *Medical Professionals* in Britain whom are
directly involved in ME patient care and survival.

Can be found at: http://bit.ly/cbHMoy

Some examples:

These influential individuals are very powerful and directly linked to:

Pro Governmental CFS charities
The Linbury Trust
The Insurance industry UNUM
Media ( TV, Radio, Newspapers,
The Military & UN/DOH/NHS/MRC
Private Health Care Sector)

````
These people *steer* Politicians away from funding a
diagnostic test - funding ME consultants - and
training future Doctors

````
*The tragedy of the sufferers is their lack of insight
into this process, a deficit that is reinforced by the
provision of a pseudo medical label*

````
*ME as a concept, is anatomical nonsense*

*Suicide is the only cause of death in CFS*

``````
Q) *Let me put that to Peter White, this is your field
-psychiatry - as I said, some people have said your
beliefs hold to much sway, has too much money
been spent on the psychiatric side?*

A) *No I don't think so at all*

````
*What would be your initial response to a patient
presenting with a self-diagnosis of ME?*

The correct answer was *For God's sake pull yourself
together, you piece of pond life*

````
*Patients need a diagnosis in order to organise their
dealing with the world of benefits. Both self
helpbooks and the media have tended to emphasise
medical explanations at the expense of psychiatric
conceptualisations*

````
*CBT helps patients to re-evaluate their beliefs
(and) encourages them to change their behaviour .

Change in the belief is an important factor in
recovery. Referral to *specialists* should be avoided
as they can entrench illness behaviour.*

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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>>>> 16 May 2010 <<<<
Editorship : j.van.roijen@chello.nl
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[justinreilly]

This used to be up on Luminescent feeling's youtube. I think he may have made it. In any event I'm glad it's back out there. (It would be nice if the names of the charlatans were put up next to their quotes).

 

[gracenote]

This is chilling.

 

[Frickly]

This is a very powerful video. I do wish it allowed more time between frames as it is difficult to read. Someone with no knowledge regarding the politics of ME may not be able to keep up. Thanks for posting.

 

[DysautonomiaXMRV]

''Validation is needed from the doctor. Once that is granted, the patient may assume the privileges of the sick role (sympathy, time of work, benefits etc)''

1992. Chronic Fatigue Syndrome: current issues. Wessely, S. Reviews in Medical Microbiology 1992:3:211-216

Purchasers and Health Care providers with hard pressed budgets are understandably reluctant to spend money on patients who are not going to die and for whom there is controversy about the 'reality' of their condition (and who) are in this sense undeserving of treatment.''

"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 our health service".

"M.E. What do we know (real illness or all in the mind?)" - lecture given in October 1999 by Dr Michael Sharpe hosted by the University of Strathclyde.

Prendergast, Michael. BBC Panorama: Sick & Tired: 1999

''It requires a particular attitude for physiotherapists to help people to use muscles that the don't believe work''.

Crawley, Esther. BBC Radio 4. 'You and Yours', 2007.

''Doctors prefer to call it chronic fatigue syndrome (CFS) whilst patients prefer myalgic encephalomyelitis (ME). The outcome for most people with CFS/ME is good - as many as 9/10 children and half of all adults make a full recovery''.

''The tragedy of the sufferers is their lack of insight into this process, a deficit that
is reinforce by the provision of a pseudo medical disease label. Whereas according to the new policy of the Chief Medical Officer, doctors are now obliged to collude with the self-deception of ME sufferers''.

Fitzpatrick, Michael. (Spiked Health, 17. January 2002).

"Never let patients know you think ME doesn't exist and is a disease of malingerers. ''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".

Dr Mary Church (member of the British Medical Association medical ethics committee)
Pulse Magazine
Choices for the new generation of GPs
ME patient with litigation history demands inappropriate therapy"
20th October 2001

"Question: What would be your initial response to a patient presenting with a self-diagnosis of ME? Possible answers:

a) Are you by any chance a teacher?
b) Thank you for making the effort to come along. I am sure we will be able to help.
c) For God's sake, pull yourself together, you piece of pond life.
d) Well, lets just explore that, shall we?"


(The `correct' answer was (c).
Dr Tony Copperfield (a pseudonym), described as being a GP in Essex, in Doctor magazine, 2000.

''Suicide is the only cause of death in CFS.''

(Chronic Fatigue Syndrome: A Practical Guide to Assessment and Management. M Sharpe et al Gen Hosp Psychiat 1997:19:3:185-199).''

''The label of CFS avoids the connotations of pseudo-disease diagnoses such as ME''

''CFS may serve as a culturally defined function which allows a socially acceptable
expression of distress''

''Psychiatric asssesment is recommended in every case''

''Few laboratory tests are necessary''

'''Referall to specialists should be avoided as they can entrench illness behaviour''

1997: Chronic Fatigue Syndrome and Occupational Health. A Mounstephen and M Sharpe. Occup Med 1997:47:4:217-227

Chronic fatigue syndrome and occupational health. A Mountstephen and M Sharpe
Occup Med 1997:47:4:217-227

 

[DysautonomiaXMRV]

''
"In clinical practice, no additional tests, including laboratory tests and neuro-imaging studies, can be recommended."

Michael Sharpe
Ann Int Med 1992(121)



''The good news is that ME usually disappears within a few years on its own.''

Fabulous Magazine
Dr Hilary Jones (TV 'Celebrity' & NHS Doctor)
Column: On the couch with Dr Hilary
Title: 'I was so exhausted I couldn't move'



''Most patients fulfil the diagnostic criteria for psychiatric disorder''.
''Symptoms include muscle pain and many somatic symptoms, especially cardiac, gastrointestinal
and neurological. Do any of these symptoms posses diagnostic signficance? The answer is
basically negative''.

''Such attribution conveys certain benefts, in others words, there is avoidance of guilt and blame''.

1990. Chronic Fatigue and myalgia syndromes. Wessely, S. In: Psychological Disorders in General Medical
Settings. Eds. N Sartorius et al. Published by Hogrefe & Huber 1990.



''A diagnosis of depressive illnes would be appropriate. Unfortunately this is not good enough for the patient.''

Post Viral Fatigue Syndrome and psychiatry. AS David. British Medical Bulletin. 1991:47:4:966-988)



''I've not had a single child or family say that they didn't want CBT, it's a mutual decision and they benefit a lot from it.''

Esther Crawley
BBC Radio 4
6/11/2007
2100-2130

Dr Mark Porter 'Case Notes' with Esther Crawley
Programme Number 10: 'ME'




“The majority of patients with CFS have no doubt how they prefer their conditions to be seen….the vehemence with which many patients insist that their illness is medical rather than psychiatric has become one of the hallmarks of the condition."

Michael Sharpe
Strathyclyde University Lecture, 1999





''The good news is, the spontaneous recovery rate in children is very high. By far the majority will be completely recovered within two years.''Deary, Vincent (2009). FAQ's about CFS/ME. Available online at: http://www.kcl.ac.uk/projects/cfs/patients/faqs.html#Antidepressants




CBT is acceptable to patients, safe and more effective than standard medical care. For many patients, obtaining an acceptable diagnosis
becomes their main preoccupation.

Chronic Fatigue Syndrome: A Practical Guide to Assessment and Management
Sharpe M. Wessely S et al Gen Hosp Psychiatry 1997:19:3:185-199




''Abnormal physical signs should ot be accepted as compatible with a diagnosis of CFS''

Chronic Fatigue Syndrome: A Practical Guide to Assessment and Management
Sharpe M. Wessely S et al Gen Hosp Psychiatry 1997:19:3:185-199




There lies at the heart of CFS not a virus (or) immune disorder, but a distortion of the doctor - patient relationship.

(Chronic fatigue syndrome: an update. Anthony J Cleare Simon C Wessely. Update 14th August 1996:61-69).

 

[DysautonomiaXMRV]

“Reports from doctors for employers, insurance companies and benefit agencies could reinforce beliefs and behaviour to delay full recovery."

Michael Sharpe
JRCP 2000(34)


"Purchasers and Health Care providers with hard pressed budgets are understandably reluctant to spend money on patients who are not going to die and for whom there is controversy about the 'reality' of their condition (and who) are in this sense undeserving of treatment."

“I shall argue that patients themselves have played a part in denying themselves this type of treatment."

''Those who cannot be fitted into a scheme of objective bodily illness yet refuse to be placed into and accept stigma of mental illness remain the undeserving sick of our society and our health service.''

Michael Sharpe
October 1999
University of Strathyclyde Lecture

 

[Frickly]

DysautomiaXMRV, thanks for taking the time to post the quotes. I will send this video to my family along with your quotes, if you don't mind.

Take care,

 

[leelaplay]

I echo Frickly's thanks Dys...XMRV.

To me - each quote is like a bodyblow. Having the source, seeing who said it, where, makes each blow significantly stronger.

Hopefully now, with the internet, the old power cabals will end, and accountability will make these words come back and bite these people.

 

[Robin]

''Validation is needed from the doctor. Once that is granted, the patient may assume the privileges of the sick role (sympathy, time of work, benefits etc)''

More on the sick role (http://en.wikipedia.org/wiki/Sick_role)

Sick role is a term used in medical sociology concerning the social aspects of falling ill and the privileges and obligations that accompany it.[1] It is a concept created by American sociologist Talcott Parsons in 1951.

Concept

Parsons was a functionalist sociologist, who argued that being sick means that the sufferer enters a role of 'sanctioned deviance'. This is because, from a functionalist perspective, a sick individual is not a productive member of society. Therefore this deviance needs to be policed, which is the role of the medical profession.

The general idea is that the individual who has fallen ill is not only physically sick, but now adheres to the specifically patterned social role of being sick. Being Sick is not simply a state of fact or condition, it contains within itself customary rights and obligations based on the social norms that surround it. The theory outlined two rights of a sick person and two obligations:

Rights:
The sick person is exempt from normal social roles
The sick person is not responsible for their condition

Obligations:
The sick person should try to get well
The sick person should seek technically competent help and cooperate with the medical professional

There are three versions of sick role: 1. Conditional 2. Unconditionally legitimate 3. Illegitimate role: condition that is stigmatized by others

If Wessely weren't so malicious he would be fascinating! You can just deconstruct how he thinks, it's so antiquated and academic.

My experience with being sick hasn't matched this "concept" of the sick role at all. First, the exemption from responsibility is not clean at all like stated above -- you're still responsible for yourself, just unable to attend to your responsibilities like you used to so it's a huge struggle. That loss of function is so devestating.

Contrary to the notion of priveleges of the sick role, it's actually a lot easier if people don't know you are sick. Having observed people with non-maligned diagnosis (such as cancer) become stigmatized or treated with fear, or treated oddly, I'd much rather people not know that I'm ill. If they do find out, I'm often faced with a series of questions about my illness and how it feels, and the subsequent uncomfortable and awkward position of watching someone work it out in their minds the life implications and the concluding horror. It's better for me to "pass" socially as a well person.

As far as relationships go, they must change or adapt -- you're not simply "exempt" from them. Many fall away. There is no social benefit to illness. The worst part is watching people you love grieve the role you used to play in their lives. It's like watching your own funeral and the most painful thing I've ever gone through.

Losing an education and a career is the second worst part of being ill for so many years (the worst is not having children.) There are so many psychological advantages to working and earning your own money. There's the mental stimulation, sense of reward, and neurological benefits of learning. I've missed out on so much. Being on disability is, personally, humiliating. I hate it. But how else am I supposed to survive?

The notion that millions of previously happy, well adjusted, productive people are sick because of false illness belief gets more ridiculous the longer you think about it.

 

[DysautonomiaXMRV]

How strange the XMRV study by Wessely & McClure failed to detect XMRV.......


''Our results are close to those predicted by 'learned helplessness'. Inappropriate referrals to physicians can lead to extensive physical investigation that may then perpetuate the symptom pattern of physical attribution".


Attribution and self-esteem in depression and Chronic Fatigue
Syndrome. R Powell, R Dolan, S Wessely. J Psychosom Res
1990:34:6:665-673.



''sexual problems occur in the majority of patients referred to hospital. The notion of allergies reinforce the view that the sufferer is under attack from outside elements which have nothing to do with himself or herself".


Management of chronic (post-viral) fatigue syndrome. Simon Wessely,
Anthony David, Sue Butler, Trudie Chalder. Journal of the
Royal College of General Practitioners 1989:39:26-29


''there is no justification" for the use of neuroimaging studies because 'abnormalities' require careful interpretation''.

(7.13) Joint Royal Colleges' Report on CFS (CR54) of October 1996



''Sufferers from allergies feel no guilt about their condition and are not subject to moral sanction. Sufferers from mysterious condition that lie outside conventional medical practice no longer consider themselves to be oppressed by spirits and demons but by mystery gases, toxins and viruses. This is particularly visible in the changing nature of
mass hysteria''.

The psychology of multiple allergy. LM Howard, S Wessely.
BMJ:1993:307:747-748.



''Such outbreaks are not novel. In a previous era, spirits and demons oppressed us. Although they have been replaced by our contemporary concern about invisible viruses, chemicals and toxins, the mechanisms of contagious fear remain the same.''

Responding to Mass Psychogenic Illness. Editorial: Simon Wessely.
The New England Journal of Medicine 2000:342:2:129-130



''CFS is dogged by unhelpful and inaccurate illness beliefs, reinforced by much ill-informed media coverage; they include fears and beliefs that CFS is caused by a persistent virus infection or immune disorder.''

Chronic fatigue syndrome: an update. Anthony J Cleare, Simon C
Wessely. Update 1996:14 August:61.


''I may regret this. Every time I write about chronic fatigue syndrome, also known as ME, I am swamped with vehement missives from a small but vocal minority. Some from colleagues who question the very existence of the condition while the rest come from disenfranchised patients who are convinced I am part of some NHS conspiracy to prevent them getting the treatment they deserve.''

Dr Mark Porter
TV Celebrity doctor/NHS
Sainsbury's magazine, March 2008

 

[garcia]

My experience with being sick hasn't matched this "concept" of the sick role at all. First, the exemption from responsibility is not clean at all like stated above -- you're still responsible for yourself, just unable to attend to your responsibilities like you used to so it's a huge struggle. That loss of function is so devestating.

Contrary to the notion of priveleges of the sick role, it's actually a lot easier if people don't know you are sick. Having observed people with non-maligned diagnosis (such as cancer) become stigmatized or treated with fear, or treated oddly, I'd much rather people not know that I'm ill. If they do find out, I'm often faced with a series of questions about my illness and how it feels, and the subsequent uncomfortable and awkward position of watching someone work it out in their minds the life implications and the concluding horror. It's better for me to "pass" socially as a well person.

As far as relationships go, they must change or adapt -- you're not simply "exempt" from them. Many fall away. There is no social benefit to illness. The worst part is watching people you love grieve the role you used to play in their lives. It's like watching your own funeral and the most painful thing I've ever gone through.

Losing an education and a career is the second worst part of being ill for so many years (the worst is not having children.) There are so many psychological advantages to working and earning your own money. There's the mental stimulation, sense of reward, and neurological benefits of learning. I've missed out on so much. Being on disability is, personally, humiliating. I hate it. But how else am I supposed to survive?

The notion that millions of previously happy, well adjusted, productive people are sick because of false illness belief gets more ridiculous the longer you think about it.

This is one of the best posts I've read on this forum in a long time. I wanted to add to it, but really there is nothing more I can say.

 

[DysautonomiaXMRV]

"viral attribution (reflects) somatization par excellence".

Simon Wessely
CFIDS Chronicle
Summer 1994


''Beard and Mitchell have returned to obscurity, but their disease is back with a vengeance. My local bookshop has just given ME the final seal of approval - its own shelf ............... A little more psychology, a little less T-cells would be welcome".

Wessely, S. 'What your patients may be reading'. British Medical Journal, 1989;298:1532-3



''One of the principal functions of therapy at this stage is to allow the patient to call a halt without loss of face. ..... (ME patients are in) a vicious circle of increasing avoidance, inactivity and fatigue....... "

Wessely S, David A, Butler S, Chalder T. Management of the chronic (postviral) fatigue syndrome'
Journal of the Royal College of General Practioners: 1989; 39:26-9


''There lies at the heart of CFS not a virus (or) immune disorder, but a distortion of the doctor-patient relationship''.

Chronic fatigue syndrome: an update. Anthony J Cleare, Simon C Wessely. Update (Recent Advances): 14th August 1996:61-69


''The description given by a leading (doctor) at The Mayo Clinic remains accurate: 'the doctor will see that they are neurotic and he will often be disgusted with them''.

Chronic fatigue and myalgia syndromes. Wessely S. In: Psychological Disorders in General Medical Settings. ed: N Sartorius et al pub: Hogrefe & Huber, 1990


''It is usually possible to persuade these patients to try antidepressants. To exclude (patients with a psychiatric diagnosis) is practically restrictive. Perpetuating factors (include) reinforcement of sick role by mother and doctor''.

Chronic Fatigue Syndrome: A Practical Guide to Assessment and Management
Sharpe M. Wessely S et al Gen Hosp Psychiatry 1997:19:3:185-199



''It is of interest that the 'germy theory' is gaining popularity at the expense of a decline
in the acceptance of personal responsibility for illness''.

1990. Chronic Fatigue & Mylagia Syndromes. Wessely, S. In: Psychological Disoders in General
Medical Settings. Eds. N Sartorius et al. Pub: Hogrefe & Huber.


''(The term myalgic encephalomyeltis) has been used to define a supposedly specific disease associated with viral infection. Despite this, the existence of ME as a specific syndrome remains unestablished. Use of the term is best avoided''.

&

''Both self help books and the media have tended to emphasise medical explanations at the expense of psychiatric conceptualisations''.

1997. Chronic Fatigue Syndrome & Occupational Health. A MOuntstephen and M Sharpe. Occup Med 1997:47:4:217-227


''Patients need a diagnosis in order to reorganise their dealings with the world of benefits''.

1997. Chronic Fatigue Syndrome: a practical guide to assessment and management. Sharpe M, Chalder T, Wessely, S. General Hospital Psychiatry 1997: 19:3:185-199


''The use of tests to diagnose the chronic fatigue syndrome should be done only in setting of protocol-based research. In clinical practice, no additional tests, including laboratory tests and neuro-imaging studies, cannot be recommended.''

The Chronic Fatigue Syndrome: A Comprehensive Approach to its Definition and Study.
K.Fukuda, S.Straus, M Sharpe et al Ann Int Med 1994:121:12:953-959


NB: This comment above is then copied by the CDC - courtesy of Strauss/Fukuda. Source: http://www.cdc.gov/cfs/cfsdefinitionHCP.htm :Retro mad:
See bottom of page on CDC page, 2nd from last paragraph.


''No investigations should be peformed to confirm the diagnosis''.

1996. Chronic Fatigue Syndrome. Report of a Joint Working Group of the Royal Colleges of Physicians Psychiatrists and General Practioners. October 1996. Simon Wessely, Anthony David, Peter White.


''Over time, reduced or irregular activity and increased periods of rest cause physical changes in the body. These changes cause unpleasant sensations and symptoms that can be very distressing. It is important to point out that these changes are reversible with physical rehabilitation and/or exercise''.

Kings College London
Information for Patients
Physiological Aspects of CFS
Vincent Deary
http://www.kcl.ac.uk/projects/cfs/patients/physiology.html


''I can count the number of my patients made worse by graded exercise on the fingers of one hand''

CHEERS magazine
Action of Young People with ME
Professor Leslie Findly
National ME Centre
Romford, Essex.
United Kingdom

 

[Min]

''I can count the number of my patients made worse by graded exercise on the fingers of one hand''

CHEERS magazine
Action of Young People with ME
Professor Leslie Findly
National ME Centre
Romford, Essex.
United Kingdom "



- and yet the 25% Group for the severely affected report that a number of their members have been made permanently severely disabled by graded exercise.

 

[Jerry S]

This is one of the best posts I've read on this forum in a long time. I wanted to add to it, but really there is nothing more I can say. [Commenting on Robin's post]

I just wanted to second garicia's post. I don't know how our situation could have been expressed more clearly or convincingly. Thank you, Robin.

 

[DysautonomiaXMRV]

''Modern bluffers prefer the term chronic fatigue syndrome. If they really 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. Or, if you're feeling tired, you could always refer"
12th January 1995, Doctor" magazine, Dr Douglas Carnall


''GPs despise the ME generation''.

1st April 1994 "GP Medicine"

 

[free at last]

Its these kind of posts that really upset and anger me the most, opinion not based on evidence, is just that opinion.

Notice how they all agree that These malingering, self pity, not really physically ill people, almost always have a measurable temperature flu like illness at onset. Yet that part of it is always silently fogotten, brushed aside like its not, and never really was an indication that the illness is physical in nature.

Yet in my case i had numerouse flu like attacks, always with very high temperatures 102 f that were so extreme, that i used to walk around outside on my own at night, because i was frightened, needing the air on my face and skin because it made me feel like i could still breath, because the air helped me feel like i may not faint.

This happened over and over again.

Watch you disgusting Shrinks

BURNING HOT, ACHING ALL OVER, SHIVERING ONE MNUETE SWEATING THE NEXT. MY CHEST ON FIRE LIKE SWINE FLU. VISION VERY BRIGHT WITH GLOWING COLOURS, BANGING HEADACHE, MY PRIVATE PARTS SHRUNK,YEAH TINY, SMALL (but still bigger than some that will go unamed) All in my mind was it ? of course mr Weees LIE.

Out of all these patients what if some had fallen under the net, What if some tests that hadnt been performed were missing vital information. XMRV wouldnt have been found back then ( they cant even find it now lol the wpi seem to have no trouble he he, even a few of the so called negative patients ) what a joke you all are

I was young, i didnt understand, the first 4 or 5 flu like attacks i thought was just that, untill i was told NO YOU CANT KEEP CATCHING FLU THAT MUCH.

I was naive. My biggest regret was not getting my tempterature measured by the doctor on all those occassions, clearly scientifically proving that my body was under repeated attack from a unknown source.

By the time the illness had turned chronic, the temperatures had stopped, funny though how the other symptoms that i had with the temperatures (only started with the temps) continued when the temperatures stopped, like the burning chest irrtation, (often infection leading to green phlem, like one gets after a cold or flu ) does this sound like the onset wasnt related to the continuation of the illness, after the temperatures ceased ? go figure Simon

Make no mistake, i was still chronically ill, with numerouse symptoms that friends could clearly see from some distance away (pale white GREENISH face, like food posioning) But i guess when i had all those temperatures i was ill. But without them, NOW I WAS NOT EH MR SHARP.

Funny then how nearly all those symptoms continued, when the temperature illness stopped, the mind can indeed play funny tricks cant it.

Also funny how on occassion i got ill while being sound asleep, and my dreams became deleriouse.Upon waking i felt very ill. It seems strange illness belief, can even occur while sound asleep, and affect the dreaming world too then.

Go to sleep feeling ok, start feeling ill in deep sleep. Dream ill dreaming, then wake up feeling really ill, Man the mind can do some funny things cant it. CRAP, just like your assesment simon.

How the bloody hell do you know ? just because your standard NHS blood tests couldnt find the cause. At least my blood is now in the hands of the wpi, and even if i dont have xmrv. Neither you nor anyone else will ever convince me that i was just a littled tired with strange illness beliefs..

I only wish that had been true back then. Instead i was petrified, scared to my very soul, shaking with fear, crying like a baby because a attack was just starting, and i knew what was coming.

No wonder some kill them selves, (And yeah i was gonna blow my brains out if the relapses overlapped and i didnt have good days anymore, if i couldnt get a gun which i never did thankfully try to get, it would have been a lorry ) And you and your cock sure sidekicks are even heartless enough to belittle that.

I know whos DISGUSTING and it aint me. Wonder how many new undiscovered and presently undetectable viruses that could attack the human body, are yet to be discovered ? I suspect quite a few, but untill they are PROVEN, any patients that could be under the influence of them, i guess will be treated in the way i was. SORRY WE CANT FIND OUT WHATS MADE YOU ILL. YOU MUST BE JUST A LITTLE RUN DOWN, WITH FUNNY ILLNESS BELIEFS

Idiots, really for all your nhs training, you strike me as rather stupid, pig headed, cock sure, self opinionated heartless excuses for doctors. Shove that in your next paper

 

[DysautonomiaXMRV]

Brilliantly put and well done for writing that.

To think these people quoted in the last 2 pages still have control in 2010 on XMRV research is quite, well I cannot think of a word to be honest.
When I saw it was Wessely & McClure, and then the other people doing XMRV studies, once you know what I know from the words above - then the negative studies were guaranteed.

Gerwyn's excellent posts have explained, how scientifically, the 'failed' XMRV studies could never have actually detected XMRV at all, even if the cohort had been Canadian Critera CFS.
It was clear they were designed to fail. A bold claim, until one reads this quotes and realises the state we are in. Total control of information - via disinformation and even blame of the disabled population.
The only reason this happened, is because the group attacked (us) were physically too sick to take to the streets and protest. Unlike in history, where groups protest daily until their voice is heard. One cannot
do that when 'stress' makes our disease much worse, and the level of disablity is very high with at least 1 in 4 people being house bound.

And these same people who write against us, well they appear in influencial intellectual newspapers as 'experts' on CFS ME (experts by denying CFS ME as organic disease), trashing XMRV, and patients themselves, blaming us for lack of research because of our alleged bad attitude. A situation so ridiculous it's laughable if it didn't induce tears. We've also seen this before in the UK, previously from Dr Charles Shepherd and AFME's Sir Peter Spencer. (This is when conspiracy theory becomes conspiracy fact). Rule one, is to never attack your own charity members, especially when some are paralysed and have zero quality of life.

The public simply don't know about these quotes, and they are prohibited from being printed in UK newspapers because the people who say them, well they are linked to the newspapers themselves.:Retro mad: (Simon Wessely is Science advisor to the media).

Again, I cannot think of a word that is appropriate, or even a world for these people. They are anti-human. I just hope someone, somewhere will see these quotes, realise they are real and they go unchallenged by society because hatred against us is acceptable.

It's only changed by us spreading the word, and challenging people who crush us. :victory: All it takes is one journalist, one documentary on ME CFS, and one youtube video to show the world the situation we are in is identical to Nazi rhetoric against the Jews before the slaughter started. We are killed emotionally through suffering pain and terrible symptoms, and I for one and so many others on this forum - have had our futures killed. I class that as a crime against humanity, because we all had so much potential, we could have helped and furthered the world with our combined talents. Instead we resorted to coming together 30 years after the event, to lament, educate, re-group and decide on a plan of action. This could have been done by people paid to do this, many years ago. To this day, they refuse.

And so the only action was for us, the marginalised and despised to become scientists, academics, and reporters ourselves. Slowly, we become equal and through equality comes a reduction in total dominance from one group to another. There is hope, and things will change, but too late to be forgiven. Such a stupid waste of lives, by a small group of people who were nothing more than self serving and selfish. Not soldiers told to attack, but doctors who were meant to care. Doctors who wanted power for themselves, and the expense of millions of children and adults world wide.

Something so unbelievable, it is unbelieved. I for one would print these quotes of and tell anyone you meet, anyone. I've started doing this and found a friend who previously thought ME CFS was being tired.
The more people who know this language is acceptable, the better, because anyone without science knowledge can see it's cleary wrong and must be outlawed. And the people telling us there is 'No XMRV in the UK' - they are the very same people and that to anyone, is a conflict of interest.

If I had a law degree I'd know how to stop them, but don't. There are plenty of human rights lawyers though, who must know if lying in public about scientific knowledge is legal. For example the Guardian newspaper article that says about XMRV:

''Retrovirologists were instantly on the case, attempting to replicate the WPI's findings. Three teams, two in the UK and one in the Netherlands, have already reported their results. All of them have drawn a blank. Many people within the ME/CFS community refuse to believe it. They say the scientists have not properly replicated the WPI's work''. <-- They as in us, the patients. Rather than 'they' the scientific protocol that must be followed to be scientific and not, non science.

Any 15 yr old in school will know that a Scientific REPLICATION study, MUST follow the same method -so a journalist in a quality newspaper would know this also. Yet we all know who influenced the writing of this article (Wessely's Institute of Psychiaty buddy works at the same newspaper). No REPLICATION study has ever taken place on XMRV, yet patients are accused in the national press, of being in denial of three imaginary failed studies. Blame the patient, yet again.

And so the spin, and disinformation continues but I hope within 1 year this will not be quite so blatant, as it's harmful to us all.

 

[free at last]

I agree, Dysautonomia lets hope the ashford 50 results come in soon. if its not the cause for me and others on here, so be it. But if it is, and science proves xmrv can by itself (or more likely) help these symptoms come about.

I will take great delight in watching there careers fall. If these results are similiar to the science paper ( we should brace ourselves incase they are not ) but if they are. Man the shits really going to hit the fan.What a stink thats going to make.Then the NHS and goverment are going to be saying what the bloody hell is going on.

Other scientists in this country and abroad really will be forced to look into this further.And the shrinks careers will be hanging over a cliff. Woops a gust of wind called the WPI just came along and blew them over

BYE BYE weeeeeeeeeeee splat

 

[rebecca1995]

Eventually, science will put the lie to the kind of crap espoused in this video. If it's not XMRV, it'll be something else, or a combination of things. When that happens, there will be a new job market for psychiatrists, psychologists and their imitators: providing exit counseling to the ~17 million people worldwide who have suffered psychological abuse at the hands of so-called mental health care workers.

So let's save these quotes, the pamphlets, the textbooks written by Sharpe and his cronies--not just for the Museum of Shame, but as study guides for counselors called in to undo the damage inflicted by their predecessors. I imagine future generations of social workers responding, aghast, "They said what to you?"

There is something especially egregious about the variety of psychological abuse perpetrated by those whose ostenstible job is to relieve it. And what else would you call this treatment but psychological or emotional abuse? I looked up definitions and came up with this from a UK site. Relevant portions are in bold:

Psychological abuse
Includes emotional abuse, threats of harm or abandonment, deprivation of contact, humiliation, blaming, controlling, intimidation, coercion, harassment, verbal abuse, isolation or withdrawal from services or supportive networks, withholding affection, shouting, depriving the person of the right to choice, information and privacy. Behaviour that has a harmful effect on the vulnerable adult’s emotional health and development.

Sound familiar? Blaming, humiliating, depriving us of necessary medical treatment--all of those actions are evident in the video's quotes. My favorite example of coercion is in another video (can't bring myself to watch the whole thing) when Chalder advises doctors to pretend they believe our illnesses are real.

Wouldn't it be nice if we were appropriately supported by psych-types? Like, if we've been verbally abused by a doctor, we could go to a therapist, vent, prevent emotional scars from forming? But the psych is even more likely to abuse us, doubling the injury. A parallel example might be the young person who is raped, goes to his or her priest for comfort and support, is raped again by the priest.

Abuse usually involves an imbalance of power. Notice that when it comes to ME/CFS, those doling out the mistreatment are usually in good health, able to care for themselves, and collecting a sizeable paycheck. Those of us receiving the cruelty are sick, impoverished, dependent on others for basic daily care. In other words, the haves beat up on the have-nots.

The same UK document concludes, "It is natural for people to deny, retract or ignore that abuse is taking place, but it is important to be aware that anyone could be an abuser."

Yes--especially someone who gets paid to alleviate the effects of abuse.