Discussion in 'XMRV Research and Replication Studies' started by George, Jan 5, 2010.
Economist comment section Dr M White
Well said, Dr White:
Dr M White wrote: Jan 10th 2010 1:36 GMT
Although I am pleased that the Economist is covering CFIDS/ME I am not amused however, by the cute little Superman comments sprinkled throughout the article. The disease deserves more respect by the writer and editors than the style the article was written in. I have no idea why the writer/editors would use this type of style except to ridicule the disease and the patients.
CFIDS/ME has been in the public for more than three decades. There are thousands of serious research studies out on all aspects of this disease. There are millions of terribly sick and disabled bedbound and housebound who have cognitive damage comparable to those with moderate to severe dementia. The term "Fatigue" is misleading and demeaning and does not begin to capture the true destructive nature of this disease.
I have spent more than 20 years treating these sick people and I can tell you that they are indeed terribly sick. My sickest people are the ones with CFIDS/ME, not the ones with HIV or even cancer. I have treated everyone from young children to other doctors, lawyers, and even psychiatrists - and all make the same statements, all have tests and even brain SPECTS that come back so similar that I am astounded. So, as a doctor treating these terribly ill people I have not given Simon Wessely and his followers any attention. IF any of these people were to actually see and treat the sick, they too would know that this is physical and not an emotional disease where one can not cope. My patients are a hardy bunch and I am rather impressed with their abilities to withstand the punches that life, society and the medical community lobs at them time and again. I must say that I don't believe I could withstand all that my sick people put up with.
Do continue to cover this terrible disease but do so in a manner of respect and without the sound effects of a cartoon. You might also use solid data to make your case - God knows that there are reams of data out there and easily obtainable (and validated by numerous researchers and labs).
I did expect better from the Economist than what was written. WHY were those foolish little cartoon comments put in the article in the first place? Dr. M White
Many of us have contacted the Daily Mail Editor requesting that the Mail's supremely offensive poll
Do you think ME is a genuine illness
is taken down.
The Mail has run several articles about Lynn Gilderdale who died in December 2008 - two notable articles by journalist, Gill Swain, who wrote that she had never interviewed anyone so ill as Lynn.
Lynn Gilderdale's mother (Kathleen [Kay] Gilderdale) is scheduled to appear at a Lewes Court hearing next Tuesday, 12th January.
I have contacted Ms Swain, today, and all the UK National ME patients orgs. Invest in ME has confirmed that they have, today, contacted the Editor.
Alex Bannister Managing Editor Daily Mail
firstname.lastname@example.org +44 (0)20 7938 6000
Thanks, Maxine, I'll join you!
I don't think Trudie Chalder is a psychiatrist. I think she's a psychologist, started out as a mental health nurse. She might have a phD, as she is listed on a website as a professor.
What I found striking about her body language was her ABSENCE of facial expression--a flat affect--and her quiet monotone. The only time she moved her body or showed facial expression was when she was asked how long she has been doing this. Her reply was I think, 13 years. (Maybe she said 14 years.)
I have not yet been able to find out when this film was made or by whom.
I also found it interesting that one of the therapists used in the role playing was Simon Wesseley's wife.
Prof Trudie Chalder, ONE CLICK document dated 23 November 2003
Professor of Cognitive Behavioural Psychotherapy Professor Trudie Chalder
Mental Health Lead Professor Trudie Chalder Professor Chalder is a specialist practitioner in Cognitive Behaviour Psychotherapy and International expert in Cognitive Behaviour Therapy. Professor Chalder is current Director of the Chronic Fatigue Syndrome Research and Treatment Service at SLAM NHS Trust.
Note: The views and opinions expressed in the document below and the events reported are those of the author as supplied to ONE CLICK and published by the ONE CLICK Group.
From the ONE CLICK site files:http://www.theoneclickgroup.co.uk/documents/ME-CFS_docs/c_histories/Psychosocial Torture UK.doc
Name and address supplied
22 November 2003
I am writing to tell you what 1 know about Dr Trudie Chalder. She was consulted about the treatment of my son whilst he was in hospital. My son, who is 20 now, was admitted to a hospital in the District for rehabilitation with his ME. He was severely affected and bedbound and unable to care for himself. Since his discharge I have obtained the medical records and I can see that the consultant in charge wrote to Dr Simon Wessely for advice. I presume he referred the request to his colleague Dr Chalder. On my son's hospital file is a document, dated 07-03-01, a Draft Action Plan Proposal following consultation with Trudie Chalder which I attach. I find the action plan shocking, and I was particularly disturbed by the penultimate paragraph which states:
"We expect (name) to protest as well as the activity causing him a lot of pain. This may result in screams. .. . it may feel punitive. "
What I witnessed in the hospital was certainly punitive and I often saw him handled roughly and his skin marked.
This plan has never been discussed with me. I was unaware of it's existence, in fact when I spoke to the consultant asking where he was getting his advice about treatment for ME he refused to tell me. I never gave my consent to this action plan.
There was a parental meeting about physiotherapy being painful, and I was specifically asked whether I consented to this. At the time I understood the question to concern normal physiotherapy, and did not realise that I was being asked to consent to a painful psychological action plan,
In the file is a note by the physiotherapist stating that pushing into my son's contracted hamstring would cause pain. He was told "that is the point".
I believe this explains why my son was never offered pain relief; and although 1 asked for it several times I received no response, There were a number of painful incidents; he was found bleeding from the stomach in February 2001 and duodenal ulcers were detected in September 2001. He also had surgery in September 2001.
On 18 April 2001 I wrote to the consultant about the pain my son must experience in having a naso-gastric tube frequently inserted. I reported that it had been reinserted 11 times in the previous 7 weeks and asked if steps could he taken to avoid the frequency of such an invasive procedure. 1 have no record of receiving a reply.
The Action Plan also accounts far the diagnosis of "elective mutism" which was then applied to my son. This in itself has caused him great harm both before and after his discharge as everyone treats him as though he is refusing to speak. Community speech therapists have refused to work with him on the basis that he might "not be compliant or not in the mood". After three referrals one did visit him once but she appeared to have been warned by her medical director not to put anything in writing, for fear of challenging that diagnosis.
During his time in hospital all the other young people on the ward were continually told that my son could speak, and could move, but was choosing not to. They would frequently ask me why he chose not to speak. The nurses would say, "It's a lovely day, what a pity you're not out there", as though he could be if he wished. Day after day he was treated this way.
He was admitted to the hospital on 14 December 2000, initially for a three-month assessment. At the family meeting on 25 January 2001 it was stated that the final review would be on March 15 2001 and if there was no progress towards free communication a discharge plan would be agreed with the family. My son's lack of speech was clearly seen as the most serious of his disabilities.
In the file is the occupational therapy review dated 15 March 2001 recommending, "Team to debate the approach following recent consultation with ME specialist", which I presume refers to Dr Chalder. The occupational therapist then appeared to take on the role as lead therapist. There is a record of a confidential meeting on 31 May 2001, which agreed to continue with the behaviour programme. It states that, The Chronic Fatigue Service believe that this (exercise programme) is not to prevent contractures as (name) is moving and being moved enough to otherwise prevent this, but to pursue exercise to the point where he resists. The service referred to above is the one at Kings College Hospital.
At a team meeting on 28 June 2001 a provisional discharge date was set for August. In the event he was not discharged until 10 January 2002.
Until discharge the behaviour programme continued to be increased and I attempted to resist this. I wrote to the consultant and eventually complained that it was too much for my son. The response was to increase the programme further. The consultant stopped speaking to me on the unit. I then discovered that he had behaved unprofessionally because in a referral letter he stated my son was suffering from "pervasive refusal syndrome", which had never been said to me. I then realised I had been completely left out of the loop identifying my son's illness and his treatment, l complained to the Chief Executive of the hospital Trust. An investigation was promised but this never happened.
The hospital did not want to discharge my son home. They tried to refer him to two brain damage units who would not accept him, as they were not appropriate referrals. Finally a letter was written to the consultant from the House of Lords, urging him to allow my son home. Coincidentally he was discharged home soon after.
The issue of my son's consent is frequently referred to in the notes, and it is clear throughout that they did not have his consent.
This unfortunate history is a case study of what can happen when diagnosis and treatment are not discussed with the patient and his family. There was no consent to the "treatment" which caused pain and suffering. I believe that the action plan had the effect of making staff who carried it out indifferent to my son's pain and safety. He was treated with less and less respect the longer he was on the unit, not least because he failed to respond. The longer this went on the harder they tried to make him respond. By the end he was not being treated with any respect. I believe therefore that the action plan devised by Trudie Chalder was harmful and posed unacceptable risks.
There was no appraisal of evidence as to whether or not the programme was working. It is not in dispute that my son made no improvement at all during the 12 months spent in that hospital
I believe Dr Chalder has stated that
" parents... hold physical illness attributions resulting in them searching for a specific physical cause"
The implication is that to do so is both unhelpful and wrong. She must be asked to what she attributes the illness.
The approach of Dr Chalder and the Chronic Fatigue Service is diverging from Department of Health policies, like the expert patient programme, and the Report of the CFS/ME Working Group to the chief medical officer, which recommended that management should be undertaken in partnership with the patient, and should be applied flexibly in the light of their clinical course. Please note that she resigned early from the working group, as she did not agree with the findings.
An action plan, such as the one attached, is not respectful of the patient, could not be discussed with the patient, or carried out in partnership. It is not good practice to cause patients "a lot of pain", I question whether it is ethical, indeed it may be unlawful.
May I draw your attention to the controversy raging at which Dr Chalder is at the heart. She and colleagues published an article in the BMJ in September 2003, "Epidemiology of chronic fatigue syndrome and self reported myalgic encephalomyelitis in 5-15 year olds".
This has been followed by a stream of incandescent correspondence. (bmj.bmjjournals.com/cgi/eletters/327/7416/654#36770). Articles in the press, such as the recent one in the Times "Chronic Fatigue Syndrome : Tired or emotional? September 27 2003, echo the row going an in the field, Dr Chalder's position is extreme and I hope the Department of Health will consider carefully whether it wishes the Chronic Fatigue Service, of which Dr Chalder is a member, to have any role in proposals for new services for patients with ME.
And just as interesting, her mock patient was Vincent Deary.
He started as a mental nurse like Trudie Chalder. He wrote the King's College CFS Information for Patients. http://www.kcl.ac.uk/projects/cfs/patients/
His revealing "CFS and the facts of life - an article for clinicians" is there as well. http://www.kcl.ac.uk/projects/cfs/health/
Do you see anyone on this Message Board from the UK having been tested by IC? I don't. But I see many here being tested by the WPI, even PWME from the UK are. I've known and met several PWC that were tested by the WPI originally, before the study was announced on Oct. 8 and they are positive for both live and latent infections of XMRV.
(This post was originally intended for Eric but I saw as I read on that he seems to agree that the test by the IC is most likely invalid.)
Thank you so much for the letter you wrote to the Economist ParvoFighter. Awesome job!
It's not medical treatment, it's torture of physically ill people at the hands of sadists.
Trudie Chalder, PhD, MSc
Professor of Cognitive Behavioural Psychotherapy, Institute of Psychiatry, King's College London, London, UK
Vincent Deary has more recently been working in the area of voice problems.
"Main focus at the moment is on functional dysphonia (aka unexplained hoarseness) but have in the past worked with adults and children with chronic fatigue syndrome."
He used to give performances:
In 2002/3, Vincent Deary crept under the wire onto the message board run by four of the UK ME patient orgs - called MEssage-UK, moderated by the ME Association's Tony Britton (closed in late 2003).
This was the weekend that Chalder had one of her KCL CBT for CFS in young people studies published and which was picked up by one of the red tops - may have been the Mail on Sunday, possibly one of the others.
He posted a couple of comments without declaring his professional interest.
He was "outed" by Dr Ellen Goudsmit and one or two of us.
He engaged for a day or two but did not stick around for long.
I'm like that, I have more 'better' days in the summer than I do in winter and I'd like to know why.
Another gem from KCL
Another gem from KCL:
Physiological Aspects of CFS
As we said there is good evidence to show that all of the above effects are reversible by a programme of gradual physical rehabilitation. Learning to spot and deal with sources of stress is also important. Lastly, not worrying too much about symptoms is probably crucial The more one worries about a symptom, the more one focuses on it, and the more stress this generates, which in turn worsens the symptoms. Mary Burgess PhD - based on the work of Pauline Powell.
New thread important
I hope a new thread can be made for that letter.
At his invite, I've started to go through his papers but it's going to take some time, so if you have one or more papers in mind please forward them to me, this is stuff I want to know. Just to be clear, my first few exchanges were full on and confrontational, based on what I'd read in the early posts of the 'Simon Wessely on XMRV' thread, I went in all guns blazing even asking if given his oath of 'Do no harm' he would'nt have been better, as he admited he didn't know, to just say nothing on XMRV until he did. Since then it's only been through giving him the opportunity to respond, and by being prepared to fully consider those responses, that I find myself in this position, i.e. mistaken for the defender of SW, I'm not, I just say it as I see it, make me see it different and I'll say it that way.
But as you mentiond his papers, here's an extract which to me clearly shows he 'knows' it's not a psycological disorder -
Something else I was going to ask him about, he did infer to me that all of his papers were in the public domain and free to access, if that's true I'm struggling to find them. Seperately I've mailed the BMJ to ask why they list titles which are not in themselves links to papers, seems stupid to me.
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.
Do you know which book, which chapter, SW made direct reference to this quote in one of our mails, it's apparently dogged him for many years and he claims it was taken out of context, I need to confirm at work that this is indeed the quote he mentioned but if it is then he claims that it's from a quote going back to the early part of the last century, and that even then the quote has been truncated to amplify the effect. In short he claims he was trying to portray the difficulties we face, and have always faced, by quoting from one of the earliest papers he knew off, and insted the words have ever since been attributed to him.
I may have the wrong quote, and my recolections of his exact explanation may not be correct but I'm going to look out the mail tomorrow. I feel I need to look into this and know for sure what the truth of the matter is.
Fair point, I remember though, before anyone even mentioned CFS/ME, when I was being bounced from one specialist to another, I could stop all the physical stress at will just by resting, but even when I tried to go to sleep 'fear' of 'what if' was still there, mental stress can be present in every waking moment if our mind frame isn't right. I remember the releif after various cancers had been ruled out, that was when I first realised just how much I'd put myself through the 'mental mangle'.
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