The Fight is on...Imperial College XMRV Study

[kim500]

Let me give you an analogy. Let say a child has cancer. His parents take him to priest to pray for him. Nothing wrong with that. However if they took their child to the priest, and only to the priest, and not to a doctor you would say they were negligent. You might even say they were guilty of child neglect/abuse. So how is it a health service can send an ME/CFS patient for CBT and provide them with no other medical support? And yet we don't say the health service is abusing the patient. It doesn't make sense. Unless you take the position that ME/CFS is a mental disease (with physical manifestations).

This is an excellent analogy, on many levels. Indeed, psychiatry does position itself in society as having taken over the heroic domain of clergy in caring for the soul (now, in their view, that all that religious superstition has been banished - artists and poets sidelined too - in favour of the supposedly 'scientific' approach of psychiatry). Not that clergy or psychiatry are/were heroic - or had any deep caring for our souls - but that they imagine themselves as filling this heroic role in society. Parallels are disturbing - abusive clergy, abusive psychiatrists... Psychiatry remains far closer to the magical thinking of religion than anything remotely close to science. Problem is that religion is honest about it, psychiatry is not, pretending to be objective and scientific, yet devious and dishonest in methods and practice (in fairness, not all psychiatrists have this pretentious view of their field, but the Wessley-ites most certainly do).

 

[kim500]

Do you know which book, which chapter...

Holmsey, this is the citation for the book itself. Have a look in a university library catalogue. Any university with a medical school probably has it in their library. I see it's listed on Amazon too. I've not seen the book myself, but most likely SW has identified his source in the course of his chapter in this book. Google books might even have it online (have not checked this myself), where you can do a content word search for 'Wessley', 'disgusted' etc.

Title: Psychological disorders in general medical settings / edited by Norman Sartorius et al.
Publisher: Toronto ; Lewiston, N.Y. : Hogrefe & Huber, c1990.

 

[PoetInSF]

Saying "stress" causes ME is like saying driving a car causes ME. We all drive cars and we are all exposed to "stress"

I don't think anybody is saying that stress always causes ME. Rather, certain extreme stress can cause certain people to develop ME. Like some people develop PTSD after returning from a war while most others don't. (Incidentally, I found it interesting that human stress response can stay on for days, months or years, while zebras shut off theirs as soon as they escape lions).

I'm one case caused by a physical stress. And I'm the only one that I know who ended up with CFS doing competitive judo in their 40s. Not too many are as stupid as I am, but there are some and they compete just fine in their 40s (as long as they are smart enough to avoid injuries, that is).

 

[Holmsey]

Hi Holmsley,

You say that S.W. has quite pointed stated that this is a physical condition.

Please can you tell us where he has said this and give us the quote. I have never read that he says this, quite the reverse, even if sometimes only by strong implication.

Thanks

best wishes,

Countrygirl

Hi Countrygirl, you won't have read it, it was in direct response to one of my mails, I put him on the spot after reading a paper on Deconditioning which, as an extremly active sports enthusiast my whole life, I felt was absolute cobblers.

 

[Holmsey]

Holmsey, this is the citation for the book itself. Have a look in a university library catalogue. Any university with a medical school probably has it in their library. I see it's listed on Amazon too. I've not seen the book myself, but most likely SW has identified his source in the course of his chapter in this book. Google books might even have it online (have not checked this myself), where you can do a content word search for 'Wessley', 'disgusted' etc.

Title: Psychological disorders in general medical settings / edited by Norman Sartorius et al.
Publisher: Toronto ; Lewiston, N.Y. : Hogrefe & Huber, c1990.

Thanks Kim, I'll give that a try.

 

[flybro]

Wessley's paper says

'but the question of whether these alterations are a cause or consequence of chronic fatigue syndrome'.

The implication being that chronic fatigue causes the alterations through deconditioning. Which I think is 'his opinion'.

So the chronic fatigue caused by depression creates the alterations through deconditioning.

The implication being that if we continued to eat well, exercise and get fresh air that these alterations would not take place.

This would explain why the CFS champion I saw shut me up, and treated me like a fool when I tried to ask about the implication off my nan having MS, my daughter's ASD, my other daughters CFS type sympotms and gentic anomalies having been invsestigated in my own childhood.

I actually beleived before I went there that they would be intrested in this because it would add to the quallitative data that would obviously be important.

I was shocked that he wasn't interested in any of these things. At the same time his thats 'ridiculous attitude', made me feel stupid at the time. However later I told myself that he is the expert he would know better. I have nothing to worry about re my children and my grandchildren.

So as you can imagine when the XMRV findings came out, I was immediately terrified as they drew a link between the four different conditions my family had experinced. Genetic concerns, Atypical MS, autism, FM and CFS. MSC groups are also intrested in the XMRV findings.

If the psch lobby backed of on their prolific pronouncements, might we now have real help, and how many more would be alive to day to enjoy that help.

 

[outofstep]

am assuming that Wessely does think that CFS is "physical"

This is the definition of somatoforrm disorder (from wiki-too tired to dig for anything scholarly):

"Somatoform disorder (also known as Briquet's syndrome) is a mental disorder characterized by physical symptoms that mimic physical disease or injury for which there is no identifiable physical cause[1]. The symptoms that result from a somatoform disorder are due to mental factors. In people who have Somatoform disorder, medical test results are either normal or don't explain the person's symptoms. People who have this disorder may undergo several medical evaluations and tests to be sure that they do not have an illness related to a physical cause or central lesion. Patients with this disorder often become very worried about their health because the doctors are unable to find a cause for their health problems. Their symptoms are similar to the symptoms of other illnesses and may last for several years.
A diagnosis of a Somatoform disorder implies that mental factors are a large contributor to the symptoms' onset, severity and duration. Somatoform disorders are not the result of conscious malingering or factitious disorders."

Wessely believes that CFS is caused by illness beliefs and not a biological cause (ie a pathogen) so if patients change their beliefs then voila! they are cured.

So he would think that these are real symptoms-the issue is what's causing them. He thinks it's the patients' own minds.

 

[flex]

Beautifully put. Also I somtimes think we over play the "stress of modern day" line. Psychs like to use this one to simplify their argument (stress causes ME)

We are today richer,warmer and more secure than many generations gone past. We in the Uk are not being bombed from the air like in WW2, we dont live on rationed food, we dont send are children to school with no shoes on and as hard as we work it cannot compare to years gone by. If a women had 5 children 2 would probably die. I would imagine that these eras were much more stressful.

Wessely talks about 1st WW soldiers suffering from" shell shock" and compares it to GWS. He negates to mention that 1st WW soldiers lived in rat infested trenches, with no proper sanitation, or clean water, they were exposed to nerve gas and the diseased ridden bodies of their dead comrades lying next to them.

Quite an infectious attack on the neuro immune system I would say!!

Saying "stress" causes ME is like saying driving a car causes ME. We all drive cars and we are all exposed to "stress"

Poetinsf
This was my original quote in full context.

ME is a Neurological Disease as defined by the WHO. PTSD in returning soldiers is a different issue associated to stress. Gulf War Syndrome is yet again a different issue controversial for the exposure of soldiers to vacccines and poison gases( biowarfare sold to the east by the west) etc whilst many of those soldiers children are being born with neurological issues and even therir wives are showing signs of infectious disease.

 

[PoetInSF]

So how is it a health service can send an ME/CFS patient for CBT and provide them with no other medical support?

What kind of medical support would you like? There isn't much doctors can do for your CFS as of now. I think CFS patients will be better off if they stopped relying on their doctors and start focusing on what works by adjusting their lives to the reality. At least till they find the cure.

 

[flex]

Poetinsf

Your above statement is wrong.

Every chronic and incurable disease known to man has at least symptom supressent medication. Also doctors should be advocates of biomedical reasearch. They should abide by there oath to do no harm and they should use the WHO catergorization of ME Neurological disease when aiding patients to apply for sickness benefits and medical insurance pay out. That is there duty!!

Does that answer your question?

 

[kim500]

...and start focusing on what works...

This is nonsensical. Care to tell us 'what works' that can be had without medical intervention? Share your secret, please.

Yes, we can be much more rigorous about our sleep hygiene, diet, general health, but what serious treatments there are tend to require medical intervention - Ampligen comes to mind, among others.

 

[PoetInSF]

Poetinsf
This was my original quote in full context.

ME is a Neurological Disease as defined by the WHO. PTSD in returning soldiers is a different issue associated to stress.

PTSD was just an example of not all stresses causing the disorder to all people equally. And ME being classified as a neurological disorder does not preclude it being caused by a stress: a neurological disorder can be an injury to neuro/immune system by a physical/viral stress. I think too many people are obsessed with infection model of CFS that they discount the possibility of it being a stress injury too quickly.

 

[PoetInSF]

Poetinsf
Every chronic and incurable disease known to man has at least symptom supressent medication.

True. Are you claiming that doctors in UK don't even provide symptomatic relief medication in favor of CBT? No prescription for sleep medication if you are suffering from insomnia related to ME? If that is the case, then I'd agree with your complaint.

 

[Kati]

What kind of medical support would you like? There isn't much doctors can do for your CFS as of now. I think CFS patients will be better off if they stopped relying on their doctors and start focusing on what works by adjusting their lives to the reality. At least till they find the cure.

Poet, the problem is historical. The kind of medical care we deserve is the attention we needed when the outbreak started at INcline Village and even before that. Should the CDC have taken Cheney and Peterson seriously, thousands of us would be healthy or better off by now and wouldn't have lost their life spent in bed, unable to get disability, a job, a mate, children, etc...

The kind of care we deserve is compassion, access to testing to validate, medication for the pain, supportive care for the disabled, anti-virals for whom it's appropriate, blood pressure meds for POTS and NIH, access to disability and the budets to advance research in ME-CFS, which by now would be all sorted out. But Homes from the CDC, in 1984 came back to Atlanta and after weeks spent hiking rather than seeing Incline Village very ill pattients, reported that there was no illness to be reported, and it was all about mass hysteria.

In 2010, we need access to care. Acess to funds for research and education for ALL physicians, from family doctors to psychiatrists, including rheumatologists and policy makers. We need to ensure the safety of our family members, and the population at large, and veryfying our blood suppoly is free of XMRV. We need drugs that will rverse the damages and send us our lives back. Lots to be done.

Just my 2 cents.

 

[gracenote]

available articles

He more than inferred that to me. He actually stated that they are, but like you, I have not been able to find them. I can find a lot about him, but nothing by him.

Edit: I wonder if he means at public libraries.

Martlet,

I just went to Google Scholar and typed in "simon wessely" full text articles. A whole list came up. Some you can download the complete article, others only the abstracts. A lot are through ScienceDirect and you must pay for access to these. However, if you know specifically which article you want, there may be some of us who could help you get a copy to look at.

You can check out the link below.

http://scholar.google.com/scholar?q=%22simon+wessely%22+full+text+articles&hl=en&btnG=Search&as_sdt=2001&as_sdtp=on

 

[PoetInSF]

This is nonsensical. Care to tell us 'what works' that can be had without medical intervention? Share your secret, please.

Rest. curtailing all activities that does not pertain the subsistence. Walk whenever I can within my physical limit. That was enough for me to go from "why bother" to "I could live with this". Not that it will work for you as well; I understand there are much sicker people who are constantly bed bound for years.

Yes, we can be much more rigorous about our sleep hygiene, diet, general health, but what serious treatments there are tend to require medical intervention - Ampligen comes to mind, among others.

Ampligen? I suppose FDA conspired with CDC to screw CFS patients. You are assuming infection that requires drug treatment. If CFS turns out to be a physical injury to neuro/immune/endocrinal system, there may not be a drug for it.

 

[Martlet]

What kind of medical support would you like? There isn't much doctors can do for your CFS as of now. I think CFS patients will be better off if they stopped relying on their doctors and start focusing on what works by adjusting their lives to the reality. At least till they find the cure.

At the moment, a good doctor will give palliative treatment, at the very least. I rely on my doctor for:

Sleep meds - without sleep, I am much, much worse.
Prilosec - I have GERD
Metoprolol - I have re-entrant supra ventricular tachycardia.
Xanax - Taken occasionally when a particular stressor can be anticipated, as an adjunct to the metoprolol.
Pain meds - On the rare occasion that the pain is so bad that no OTC will give even a modicum of relief.

If I was somatising, then I would still need all those medications in addition to whatever else a doctor might think I need. And for the record, I would not have minded even the teeniest, tiniest bit if the two psychiatrists I saw thought I was somatising and could do something to treat me. I am not against psychological/psychiatric intervention, as long as that's what is really wrong with a person. As it is, they did not think so even when I almost hoped I was.

 

[flex]

PTSD was just an example of not all stresses causing the disorder to all people equally. And ME being classified as a neurological disorder does not preclude it being caused by a stress: a neurological disorder can be an injury to neuro/immune system by a physical/viral stress. I think too many people are obsessed with infection model of CFS that they discount the possibility of it being a stress injury too quickly.

Wrong again

The code under the WHO expressely states that any illness can not be listed in terms of both a phsysical and psychological causual agent.

1) CFS is an umbrella term that includes mental illness. (E.g. OXFORD CFS Criteria). Used by Wessely/Sharpe/White/Chalder/ etc
2) CFS/ME is a dual coding description of two disease states (not allowed to dual code under the WHO), however it exists only in the UK.
There is no such thing as CFS/ME or ME/CFS as a disease state - precisely due to the dual coding issue that is prohibited.

Although I do understand CFS has a different meaning in the US.

 

[Jenny]

Poetinsf

Every chronic and incurable disease known to man has at least symptom supressent medication.
Does that answer your question?

Not true in the experience of several members of my family and friends I'm afraid who've suffered with various cancers and Hep C.

 

[flex]

Jenny,

I was talking about the minimun of palliative care not exclusively for your individual disease. I am sorry if your relatives didnt even recieve that