Lady Mar writes to Prof Wessely

[alex3619]

I do agree with one point you are making Holmsey, very strongly. Simon W or indeed any other individual cannot be primarily responsible for all the things we are complaining about, it involves a wide and diverse group from medicine, government and the sciences, combined with failure of the media. That network of interactions is likely to be much more important, and provide many more opportunities for advocacy, than any individual. That does not mean that Simon W's contribution can't be a part of that analysis, but it does mean we have to be careful about emphasis.

 

[heapsreal]

if cbt and get work, why arent they being pushed as the main treatments for other immune disorders, autoimmune disorders etc. Thats because its dam dangerous and would seriously harm them. They are being pushed onto us as we are seen as lazy and depressed and guys like SW who is at the head of the class is pushing this issue as they dont really care about us and it puts money in their pockets. They deny further testing and treatment because if something if found then they will lose their foot hole into their money making bussiness. Poor buggers in the UK wont get any real treatment and care until this illness belief bullshit, cbt/get and the mob promoting it are kicked to the curb. Even though some countries are abit more progressive, he has definately played his part in slowing research down world wide.

I dont know how any cfs/me person could stick up for the germ.

 

[natasa778]

Evidence is objective, stories are subjective.

Ever heard of qualitative research?

I cannot believe I am even having this discussion. What a waste of time.

As I said, highly insulting to patients dismissing their experiences like this.

 

[peggy-sue]

Perhaps a really major problem in psychiatry and psychology is that as real science has progressed - (that's its nature) subjects of scientific study change too.
What use to be called Pharmacology is now Neuroscience - it has progressed. New fields of study have opened up. Molecular biology didn't exist in the '70s.
Neuroscience and the newly evolving Behavioural Neuroscience are the SCIENTIFIC faculty subjects which are replacing the ARTS faculty subjects of psychology and psychaitry (Psychiarty is just a medical degree with a couple of years of psychology tacked on the end).

But those stuck up in their arty theroretical ivory towers are absolutely terrified of their subjects being relegated to the annals of interesting and unfortunate historical ancedote and are clinging to them like grim death.

And Science Faculties are letting them get away with it - on the grounds of "academic respect".

 

[Holmsey]

Not true. You can have subjective or objective evidence.

For example, the PACE Trial's (self-reported) primary outcomes were based entirely on subjective evidence, which is why the primary outcomes are potentially biased.

Also, I don't think it's helpful dismissing the first-hand experiences of the entire forum membership, as simply being 'stories'.

Actually, it's a bit disrespectful.

If the medical profession, and the psychological proponents, listened to patients more, then we would not have this level of disconnect between patients and the medical establishment, that we have been discussing.

Don't want to get into word play, in the UK subjective testimony requires at least one peice of corroborating evidence in law, that's the interpretation I was aluding to.

If Pace outcomes are 'potentially biased' then potentially false evidence has been provided. Again in law to provide false evidence, to lie, is illegal. All of this supports the notion that 'evidence' without word play equates to 'truth', subjective truth is opinion not absolute truth, whether or not the subjective opinion correlates to an absolute truth.

In any case, we're going off subject.

 

[Holmsey]

Ever heard of qualitative research?

I cannot believe I am even having this discussion. What a waste of time.

As I said, highly insulting to patients dismissing their experiences like this.

Hi Natasa,
I'm doing my best to be honest, considerate and respectfull of all other opinions expressed, to suggest that this wastes your time I find offensive, certainly more so than your earlier critisism of IVI.

For the record, I'm highly defensive of subjective experience, no one can argue with what a person experiences, it's when you start to generalise that experience and assumue universal principles apply which in turn overlay or diminish the experience of others that it becomes a point of debate.

 

[notinfinite]

You are as you say entitled to pursue you beleifs in any direction you choose, whether or not that direction proves usefull to you individually or the advocacy around our illness in general can only be judged against your intended goals.
With regards to SW and treatments. SW didn't adopt those treatments, the NHS did, politicians did. SW does not dispense those treatments alone, clinicians do, clinicians which we must hope in the main possess more medical knowledge than most of us. The issue is that we've lost / are loosing the rational argument around our illness, or if you like not us, but the biomechanical lobby within the scientific community. That the Psyc lobby's argument for whatever reason has been accepted over the alternate one is only the Psyc's fault if you can prove dishonesty on their part, i.e. that they do not profoundly beleive their own rhetoric and I see continuing evidence that they are entirely convinced.


There isn't a cornucopia of treatment options out there, and the Psyc's aren't the only ones touting low level anti-depressant drugs to assist with pain and sleep, I was finally convinced to go down this route by Dr. Sarah Myhill's clinic, I'd refused my own GP even though his motives were based on exactly the same understanding, that it was not for depression but to aid sleep and pain symtoms. You indicate that withdrawal is a bitch, they're trialling Rituximab for our illness, that's one serious drug.


I'm not sure we've ever kept quiet or engaged with psychiatry so I'm unable to follow your argument that you have evidence this hasn't worked. As to the assertion that it's SW's problem re. death threats and miss-quotes, my only comment on that is that the positioin of 'society has a duty of care towards me' is irreconcilable with 'but I don't have to conform to societal norms because somehow I'm a special case'.


By this argument then, we are all on our own or do you beleive we should have societal rights that SW does not. All law all protocol is the product of how we collectively want to be treated, is it not?

Thank you. Still do not agree with you or IVI. I'd love to spend a while dissecting your reasoning too - not up to it.
Hope you are never on the receiving end of shrinkology.

Ref the rituximab - yes it is a serious drug. If it works, I will take it - my point was that the antidepressants did not work, they made it worse. Is that OK for you? I expressed my experience with shrinks - is my experience invalid compared to yours and IVI's ?

The law - your interpretation of what the law is or is not is irrelevant - the law is nothing more than a contract - it has no meaning and it is transient in that it constantly changes to meet the whims of authority.

I feel offended at the content of yours and IVI's posts, yes this is subjective but I am weary of being offended and do not need to come here for more of the same treatment that I have had from doctors, physios and shrinks.

 

[taniaaust1]

Firstly, there are perhaps two (no more) cases where a coroner has allowed that M.E was a contributory element to a death. However even in these cases it is not clear that the Coroner intended M.E to be understood as being a direct organic cause, rather than a complicating psychiatric condition.

ME patient Sophia Miza died of ME.. she had dorsal root ganglionitis, inflammation of the ganglion. http://www.ahummingbirdsguide.com/wmarwillinquest.htm

INQUEST FINDINGS
Although Sophia died in distressing circumstances in November 2005, the inquest was not held until 13th June 2006.
The first autopsy found no cause of death. Two weeks later, more tests were carried out and again, no cause of death was found.
Whilst we ourselves were instrumental in securing the release of Sophia from the locked ward, it was entirely through the personal intervention of Simon Lawrence of the 25% ME Group for the Severely Affected (of which Sophia was a member) that permission was sought for a further autopsy and -- unusually -- was granted by the Brighton Coroner.
This time, the examination of Sophia’s spinal cord showed unequivocal inflammatory changes affecting the dorsal root ganglia, which are the gateways for all sensations going to the brain through the spinal cord. These inflammatory changes affected 75% of Sophia’s spinal cord.
At the inquest, one of the pathologists stated: “ME describes inflammation of the spinal cord and muscles. My work supports the inflammation theory because there was inflammation in the basal root ganglia”.
Dr O’Donovan (the neuropathologist who, along with Dr Abhijit Chaudhuri, had examined the spinal cord) stated that psychiatrists were baffled by Sophia’s illness, but that “it lies more in the realms of neurology than psychiatry, in my opinion”.
Both Dr O’Donovan and the local pathologist, Dr Rainey, said that “ME” was the old-fashioned term and that new terminology --- CFS---has come in, so that was the term that would be used.
Dr Rainey also gave evidence that Sophia had a “fatty liver” (see below).
In Sophia’s case, the Coroner was specific: the medical cause of Sophia’s death was recorded as 1a) acute anuric renal failure; 1b) CFS. The second cause was recorded as including dorsal root ganglionitis. Sophia died as a result of acute renal failure arising as a result of ME/CFS.

(note the first autopsy wasnt done well enough to find a thing.. this makes me wonder how many others are dying with this kind of stuff missed). Note for this case the coroner concluded Mirza died as a direct result of CFS. (sorry I dont have the energy right now to go and find the actual link of what her autopsy said for you to read so you will have to find it yourself if you want the proof of what im saying here but if you search enough you should find it)

ME patient Lynn Gildergale died of ME.. she had dorsal root ganglionitis. (infected nerve cells)

"When her body was examined by a pathologist who specialised in ME, he discovered dorsal root ganglionitis — infected nerve roots — and nodules of Nageotte, which are little tombs of dead cells, in her spinal cord. These would have caused her terrible pain and sensory nerve damage. His findings were proof beyond any doubt that Lynn’s ME was a neurological disease."
From: http://www.dailymail.co.uk/femail/article-1379005/Kay-Gilderdale-The-deeply-moving-story-mother-accused-murdering-sick-child.html

ME patient Alison Hunter died of ME.. her death certificate states the cause of death as "severe progressive ME".
The pathologist’s report confirmed that she had severe oedema of the heart, liver and brain. She had also suffered severe ulceration to her throat, seizures, paralysis, other neurological symptoms, and gastrointestinal paresis with failure of the gut and bowel. One of her specialists on commenting on her case said (James Ibister, Head of Haematology at Royal North Shore Hospital, Sydney), said: “To be honest, I felt helpless towards the end." There was nothing her doctors could do for her worsening condition.

Ive known of at least six ME cases who have died directly (we arent talking about suicides) of ME and its related causes. (another his heart stopped due to some kind of viral attack (reactiving virus stuff), 2 others died of suddenly becoming allergic to things they previously were okay etc). This illness and its symptoms are killing people in various ways..

I dont undrerstand how some can keeep equating ME with being a psych issue when people are actually dying from it and its symptoms.

 

[Valentijn]

With regards to SW and treatments. SW didn't adopt those treatments, the NHS did, politicians did. SW does not dispense those treatments alone, clinicians do, clinicians which we must hope in the main possess more medical knowledge than most of us. The issue is that we've lost / are loosing the rational argument around our illness, or if you like not us, but the biomechanical lobby within the scientific community. That the Psyc lobby's argument for whatever reason has been accepted over the alternate one is only the Psyc's fault if you can prove dishonesty on their part, i.e. that they do not profoundly beleive their own rhetoric and I see continuing evidence that they are entirely convinced.

I think it's possible for them to both profoundly believe their own rhetoric and to behave in a dishonest manner. As I've shown before, Wessely does advocate misleading patients for their own good - why stop there? Why assume there is a firm line between misleading us and misleading politicians and GPs for our own good?

While I think there are a lack of what might be considered outright lies, there is an overabundance of overstating their case. A paper by Wessely might cite 50 other papers to back up claims that CBT/GET is the only effective way to treat ME/CFS, and that the majority of people with ME/CFS can be diagnosed with mental illness, and that ME/CFS has far more in common with psychological than physical disorders ... but doesn't come with a warning that none of the theories underlying CBT/GET have ever been proven, or that a great many people experience no objective improvement with CBT/GET, or that harms of CBT/GET have never been studied, etc, etc.

These researchers state things very strongly, when there is no strong support for what they are saying. That is deceitful. It is also unrealistic to expect politicians and GPs to conduct a detailed analysis of these papers themselves, especially when they have been published in supposedly high-quality peer-reviewed journals.

The researchers themselves are extremely accountable for presenting a very one-sided view, especially when you consider that some of those researchers, such as Wessely, have gone out of their way to present their assumptions to government bodies as if they were facts.

If you want an example of one-sided unsupported statements by Wessely where theory and assumptions are presented as certainty, please read these short excerpts from the National Archives where he addressed advisory board members of a government benefits agency:
http://forums.phoenixrising.me/index.php?attachments/wessely-board1-pdf.4279/
http://forums.phoenixrising.me/index.php?attachments/wessely-aylward-letter1-pdf.4280/

 

[peggy-sue]

PWME are more prone to cancers than "normals".
PWME have a life-expectancy measure that is 25% less than "normals".
(So, given my age, I should already be dead!)

(sorry, I don't have the references to hand)

 

[Jarod]

I cannot believe I am even having this discussion. What a waste of time.

I think that is one of the goals. To confuse and bury the truth with disagreement. As long as their is conflict and disagreement, it makes it difficult to get to the truth.

Now what I want to know, is if taxpayers are funding this behavior.

 

[taniaaust1]

Sophia was certainly physically ill with CFS/ME. However, she became suicidal refused to eat and she thought she was allergic to water. She was a danger to herself. She died of renal failure caused by not getting fluids and any inflammation could have been explained by this. A tragic tragic story but not the same as the forum meme that circulates to prove a point of how we are mistreated. Yes, mistreatment happens and even one case is too much. I believed this story for many years.. At what point are we going to be like the boy who cried wolf and nothing we say will be seen as being credible.

Barb C.

I'd like to point out that thou firstly the initial autosy findings were "inconclusive", after an inquest the coroner recorded her death as acute renal failure due to dehydration , caused by CFS.

The cause of death was stated as
'The verdict was Acute aneuric renal failure due to dehydration arising as a result of CFS'

http://www.investinme.org/Article-050 Sophia Wilson 01-RIP.htm

The lady Coroner was very firm and laid down the rules of the Court at the very beginning. The only evidence that would be considered was that which directly led to the death of Sophia. The primary purpose of the court is to establish why Sophia died.​

​

Evidence was heard first from Dr. O’Donovan, the neuro-pathologist who had examined the spinal chord along with Dr. Chaudhuri. He reported that the spinal chord looked normal but that he had found that 4 out of 5 dorsal root ganglia were abnormal and showed disease. He had not been able to find exactly what had caused this but the result was dorsal root ganglionitis – an inflammation.​

The Coroner then retired to consider the verdict which she came back and delivered in narrative fashion.​

She said that Sophia had been an attractive and vigorous young woman until she was struck down by illness. ​

She suffered substantially and became extremely unwell and was effectively housebound and bed-ridden. Her Mother was her devoted carer.​

The medical cause of death was ​

1a) Acute aneuric renal failure due to dehydration
1b) CFS
2) Previous history of meningitis, dorsal root ganglionitis and hepatic steatosis.
Sophia died as a result of acute renal failure arising as a result of Chronic Fatigue Syndrome (M.E.)

 

[taniaaust1]

Firstly, there are perhaps two (no more) cases where a coroner has allowed that M.E was a contributory element to a death. However even in these cases it is not clear that the Coroner intended M.E to be understood as being a direct organic cause, rather than a complicating psychiatric condition.

I guess you would say that Sophia Miza died of renal failure due to dehydration due to a complicating psychiatric condition eg choosing not to drink? rather then think she died cause she was able to drink etc.

How about the death of ME patient Alison Hunter.. who's death certificate put her cause of death down to “Severe progressive ME”. The pathologist’s report confirmed that she had severe oedema of the heart, liver and brain. She had also suffered severe ulceration to her throat, seizures, paralysis, other neurological symptoms, and gastrointestinal paresis with failure of the gut and bowel.

In January 2003 the wife of Richard Senior died of ME/CFS; the North Wales Coroner entered CFS as the cause of death on the death certificate.

I know there was another ME person who died 2-3 years ago from an usual reaction to something.. cordial? from head lice? (there was two deaths in about a 12 period where strange reactions to things killed the ME people). I remember one of those ME or CFS was also mentioned on her death certificate as possibly playing a part. Due to ME both these had all kinds of sensitivities.

There is far more then "2". I know of 5- 6 different people who have died of ME/CFS and many of those have it mentioned on their death certificates...non suicides or suicides which altopy showed dorsal root inflammations.

and then there was Cory.. but I dont think ME/CFS got put on his death certificate.. he died of inflammation of the heart due to some reactiving virus (which had also left scar tissue showing he'd had past infections).

 

[Holmsey]

Thank you. Still do not agree with you or IVI. I'd love to spend a while dissecting your reasoning too - not up to it.
Hope you are never on the receiving end of shrinkology.

Don't worry, save it for a day when you're feeling better, and I accept that we're in different places with it. Yes, I'm sure I would find that difficult.

Ref the rituximab - yes it is a serious drug. If it works, I will take it - my point was that the antidepressants did not work, they made it worse. Is that OK for you? I expressed my experience with shrinks - is my experience invalid compared to yours and IVI's ?

I think it was in reply to one of Bob's posts, I absolutely do not deny you your experience, no one can argue with experience, for an individual it is absolute, by that I mean there is no other way for you to understand your experience other than from where you are at the time, you can't for instance adopt my life and my thinking and try to understand it from there. Discussion can only arise when experience is elevated to something else such as a general principle or to a point where it denies the experience of others.

The law - your interpretation of what the law is or is not is irrelevant - the law is nothing more than a contract - it has no meaning and it is transient in that it constantly changes to meet the whims of authority.

Yes, a societal contract, just like health care. I've no objection to someone living outwith that contract, 1%ers or Outlaws whichever term you prefer, my point was I find a position of picking and choosing which parts of the contract one wishes to acknowledge immoral.

I feel offended at the content of yours and IVI's posts, yes this is subjective but I am weary of being offended and do not need to come here for more of the same treatment that I have had from doctors, physios and shrinks.

I'm really sorry to hear that, I can't speak for IVI but I haven't perceived any attempt to offend, IVI has his way of putting things which can be to the point but I've never detected anything which would lead me to beleive he is being other than straightforward and honest regarding his viewpoints.
As for myself, I have made no attack, I have said nothing which does not reflect my honest position and I've tried to be respectfull of the views of others.
All I can offer is that offence is taken, it is not forced. I don't know if there's a section of the site which is purely for support but this section at least is pretty messy at times, all sorts with all sorts of differing views as such I avoid it when I'm run down, no point in spending energy or raising tension in discussions that will always come around again.
Take care, Zee.

 

[Holmsey]

I think that is one of the goals. To confuse and bury the truth with disagreement. As long as their is conflict and disagreement, it makes it difficult to get to the truth.

Now what I want to know, is if taxpayers are funding this behavior.

To confuse and bury the truth with disagreement, what is the truth, who is burying it, surely a Psyc could claim the same about all off the biological research, that it's just a smoke sceen no doubt quoting XMRV in the first paragraph.
Both sides can make arguments along these lines, it's not good advocacy to assume a position of already knowing on a subject where the only common ground is an agreement that nobody actually knows.

 

[Jarod]

To confuse and bury the truth with disagreement, what is the truth, who is burying it, surely a Psyc could claim the same about all off the biological research, that it's just a smoke sceen no doubt quoting XMRV in the first paragraph.
Both sides can make arguments along these lines, it's not good advocacy to assume a position of already knowing on a subject where the only common ground is an agreement that nobody actually knows.

See? I believe that is the whole point. To create an opposing viewpoint.

 

[peggy-sue]

I don't agree that "nobody knows."
That's simply the psychiatrist's position, which comes from ignoring real science.
(In all fairness, they're not educated well enough to be able to be reading or understanding proper scientific work.)

 

[taniaaust1]

But Bob, there is a serious point to what IVI has said, patients are not somehow separate from their illness. Would you not blame a heart or liver diseased patient who continued to smoke for being irresponsible. What about an alcoholic who after being given a liver transplant continues to drink until they need another, I can think of at least one sportsman who did just that. What about someone who is life threateningly obese but refuses to adopt the suggested life style changes deemed to be his only chance at life.

In ME/CFS there's clear evidence that stress effects our condition, in fact I doubt there's an illness known that stress doesn't, and yet many of us would refuse CBT as an inappropriate intervention when in fact it's one useful purpose is to provide techniques for stress reduction.

ummm I dont know where some people at these forums get the idea that we would refuse CBT if we needed it.

I can say that I did CBT (it was actually DBT so included CBT) for two years (I was going weekly for a while) and it actually didnt help me one bit. It actually made me sicker as I was expending too much energy to get to the appointments and talking to another was draining and just left me crashed after the visits.

I actually didnt learn anything at all either there. I'd previously read all the self help books for stress reduction... had previously also been a meditator.. knew how to do progressive body relaxation and visualisation techniques..even before i started. (I think many with ME/CFS try everything). I went and kept going cause I was told it would help me lead a less stressful life and help me with my emotions.. and it didnt do that at all and just often actually made me sick as I'd post exertionally crash during the session or right after it.

I'd like to add too..due to lack of understanding of psychologists of ME symptoms.. some of their stress techniques they tried to get me to do... were very bad for my condition. eg Distraction technique for if i was getting emotional and having trouble switching off.. I got told to go and hold some ice to distract.. Thing is that hurt my hands and as I got Raynauds.. it was bad as I then would completely loose circulation.

Play music to destress.. well that was bad too as I often had like neuro over stimulation and any beats in music.. would make my neuro stuff flare up and send my body into tremors..

The worst stupidest thing I got told by one to do (I saw 6-8 different therapists) was to go for a walk. Thing is I cant even leave my house alone as I collapse (at times unconscious). Its dangerous for me to go out and walk .. Ive collapsed onto roads unable to get up again. Anyway..for me the CBT stuff was a disaster. Ive had others at this site, share similar stories with me to my own.

I still do see a psychologist (ve been seeing them now for probably 4-5 years?) but the one I see now only offers me supportive counselling.. someone to talk to and to advise/guide me eg if I have issues with a doctor she'll encourage me to seek another who will listen to my health issues etc etc. Whenever I have a major life issue with the ME/CFS or another due to it, I know I have my psycholgist I can go to for ideas (as my brain really dont think well at times)..

When I read your post you seem to be implying that we are responsible for our illness? just like someone who is obese is responsible for being overweight? I hope Im misunderstanding what you seem to be implying as that is very offensive as many of us have tried everything we possibly could to get better and we are still just as sick. It ISNT our fault we are ill and Im shocked if Im hearing that message on a ME/CFS site for patients.

 

[Bob]

The researchers themselves are extremely accountable for presenting a very one-sided view, especially when you consider that some of those researchers, such as Wessely, have gone out of their way to present their assumptions to government bodies as if they were facts.

If you want an example of one-sided unsupported statements by Wessely where theory and assumptions are presented as certainty, please read these short excerpts from the National Archives where he addressed advisory board members of a government benefits agency:
http://forums.phoenixrising.me/index.php?attachments/wessely-board1-pdf.4279/
http://forums.phoenixrising.me/index.php?attachments/wessely-aylward-letter1-pdf.4280/

In think these documents are both from 1993, and they give us a very interesting historical record.

Quotes from SW from the above two documents:

"As we, and now many other groups, have shown that the only determinant of outcome in this condition is strength of belief in a solely physical cause, then it will also itself contribute to disability and poor outcome." [Original emphasis included - No emphasis added by me.]

"Rehabilitation is essential, exercise is good for these patients, prolonged inactivity cause adverse physical and psychological consequences. Most cases can be expected to improve with time." [My emphasis.]

"It seems likely that the greater the disability, the more likely is the disorder to be associated with either misdiagnosed psychiatric disorder or poor illness management. Many are iatrogenic ie Doctors contribute in perpetuating the disease and its symptoms."

"As regards benefits:- it is important to avoid anything that suggests that disability is permanent, progressive or unchanging. Benefits can often make patients worse." [My emphasis.]


[My comment: As far as I am aware, these quotes are not taken out of context, in terms of the official documents, as very little further context is given from/by SW in these documents.]

 

[peggy-sue]

Just as well I slip through all the benefits loopholes and don't get any financial assistance at all, then.
I wouldn't want anything that made me worse.