Saturday, April 30, 2011

Professor Wessely: it is time to spend a day helping care for a person with a severe disability/ severe ME

Mike Steketee, The Australian April 30, 2011:

It is to spend a day helping care for a person with a severe disability -- to "walk in our shoes" as Sue O'Reilly and Fiona Porter, who signed the letter and who have disabled children, put it. "There are many parents of adults and children with special needs who believe that politicians, although sympathetic, do not really fully appreciate what it is like to be in our situation," they write.

If the Prime Minister is too busy on a weekday, a Saturday or Sunday would be fine, they add, since "it is of course the case that supporting a person with severe dependent disabilities is, for many tens of thousands of carers, a seven-day-a-week role".

To ensure that such an event is more than just a photo opportunity, they suggest Gillard spends at least 10 hours with a disabled person. The same letter has gone to nine other leaders and politicians with responsibilities in the area, including Wayne Swan, Tony Abbott, Julie Bishop, Joe Hockey and Bob Brown.

The campaign for proper recognition of people with disabilities and their needs has come a long way in the three years since the 2020 summit adopted as one of its "big ideas" a new, insurance-based system proposed by Bruce Bonyhady, chairman of disability service provider Yooralla.

Read more>>

Irish Medical Times: Doctor shows lack of ME/CFS knowledge

Jane Colby, April 28, 2011:

Dear Editor,

Oh dear, poor Dr John Monaghan of Portiuncula Hospital, showing himself up like that in public (IMT, April 15, 2011, http://www.imt.ie/opinion/2011/04/the-pace-of-chronic-fatigue.html).

In arguing that ME/CFS is a manifestation of patients’ self-delusion, he appears astonishingly ignorant of a basic fact; the real rift is not between doctors and patients, but between different groups of medical researchers, with patients caught in the middle.

Many of these are children, some severely ill, suffering unbearable neuropathic pain, unable to be cuddled and too weak to stand.

Dr Monaghan appears unaware of the present state of scientific knowledge concerning this illness. He appears not to know of virologist Dr John Chia MD, whose extensive research on samples of stomach lining has demonstrated infestation with enteroviruses (relations of poliomyelitis). He also appears not to know of research at Dundee University (2009), showing blood abnormalities (elevated cell death rates and inflammation) in children with ME/CFS, also consistent with a persistent viral infection. In fact, I am left wondering if he knows anything much about this illness at all.

While he is in the mood for letter-writing, he may like to approach the Flat Earth Society; I feel sure they would welcome a new member.
Alternatively, if humility lurks somewhere within, he may wish to google the Enterovirus Foundation and start from there.

Jane Colby, FRSA,
Executive Director,
The Young ME Sufferers Trust,
Holder of The Queen’s Award for Voluntary Service:
The MBE for Volunteer Groups
www.tymestrust.org

Friday, April 29, 2011

We should listen to the PACE trial delusionists and take a leaf out of their book



I asked 001/7 about this picture with the cab, and he said, look, mister that is what is wrong with the ME community.

For once, only once, should you listen to the delusionists and take a leaf out of their book.

You see, they are very good at selling HOT STEAM FRIED BAKED AIR but at the same time call their opponents all sorts of names.

So what they do is simple. They go on the attack, put you on the defence and at the same time launch an amazing PR campaign.

Even a US presidential candidate doesn’t spend that much time, money and effort on such a campaign.

Worse, it is even paid for by the general public as all these DELUSIONISTS are actually paid for by the government, so that is you and ME.

So, the solution is very simple indeed. Read more>>

May 2011: The Irish Invisible Tour



All Showings Are Free!

Thx to MS: "INVISIBLE gives voice to a select group of Vermonters who are gravely ill, and until now, have been out of sight. You will hear first person accounts from your Vermont neighbors as they talk about living with Chronic Fatigue Syndrome, CFIDS, Fibromyalgia, or Myalgic Encephalomyelitis, the disease with a thousand names and no known cause or cure." (from the "Invisible" website: http://www.invisiblethemovie.com/invisible_movie.html )

No, Fibromyalgia is NOT one of the "thousand names", it's a different condition entirely.



Read more>>

Californian man lived with dead woman for a week

By JOHN S. MARSHALL, 4/28/2011:

SAN FRANCISCO — Complaints of an unusual smell led police to discover a woman's badly decomposed body inside a California studio apartment where they say a man had been living with the corpse for at least a week.

Santa Cruz police officers found the 30-year-old woman's body after entering the apartment at about 7 p.m. Tuesday. Investigators haven't been able to establish how the woman died because of the deteriorated state of her body, authorities said Wednesday.

Investigators also haven't determined how long the woman had been dead, but Santa Cruz deputy police Chief Steve Clark said he was comfortable saying it had been at least a week.

The apartment's resident, 63-year-old John Clauer, was in custody on a no-bail parole hold based on a prior drug conviction, Clark said.
It wasn't clear if Clauer and the woman were sharing the apartment as roommates or if they were romantically involved. Investigators were questioning neighbors and canvassing the area to try to figure out the relationship between the two, Clark said.

"If it is indeed a homicide, then he becomes a suspect," Clark said. "He could also be charged with failure to report a death as appropriate."
Clauer has had what Clark described as a "storied history" with Santa Cruz police, having been arrested previously on drug and alcohol related offenses, though it wasn't clear how much time Clauer had served behind bars.
Clauer didn't have an attorney by Wednesday evening.
An autopsy was planned for later this week. The woman's name hasn't been released.

Royal wedding live stream


Live coverage from London as Prince William and Kate Middleton are married in Westminster Abbey.

Royal wedding live stream

Royal wedding Picture gallery


IDSA censoring Lyme disease TV broadcasts


by Lyme disease film "Under Our Skin" on Friday, April 29, 2011:

Open Eye Pictures has recently learned that the Infectious Diseases Society of America (IDSA) has been trying to stop the television broadcast of its award-winning documentary on Lyme disease, UNDER OUR SKIN. Working behind the scenes, IDSA officers and members have been contacting the Public Broadcasting Service (PBS), the National Educational Telecommunications Association (NETA), and local PBS stations, calling our film “dangerous for viewers” and full of “conspiracies.”

The Public Broadcasting Service (PBS) was created in 1967 to “provide a voice for groups in the community that may otherwise be unheard,” and serve as “a forum for controversy and debate” by broadcasting programs that “help us see America whole, in all its diversity.”

We are heartened that no PBS affiliate station has folded under the pressure. UNDER OUR SKIN is the first televised documentary dedicated to educating the public about the plight of Lyme disease patients, who have been abandoned by the medical establishment, in part, because of the IDSA’s flawed Lyme guidelines development process.

While the primary focus of UNDER OUR SKIN is to inform viewers about Lyme disease through the eyes of patients, it also includes interviews with several authors of the IDSA Lyme disease treatment guidelines. These authors were briefed by the IDSA vice president of communications before the filming began, and we believe these interviews accurately represent the IDSA viewpoint on Lyme disease.

UNDER OUR SKIN also shows the unfolding of the investigation into the IDSA Lyme disease guidelines by former Attorney General Richard Blumenthal of Connecticut. His final investigative report found that there was:

• Significant conflicts of interest among the original IDSA guidelines authors,
• Suppression of scientific evidence by authors, and,
• Exclusion of panel members with opposing viewpoints.

The IDSA’s suppression of dissenting views continues. This time the target is UNDER OUR SKIN. (More examples of IDSA censorship are listed at the end of this article.)

Recently, the importance of transparency and open dialogue in medical guidelines development were underscored in a report by the Institute of Medicine (IOM), “Clinical Practice Guidelines We Can Trust.” In this mandate for guidelines reform, the IDSA Lyme guidelines were called out as an example of a process gone awry:

“This case highlights the need for standardization and transparency in all aspects of systemic data collection and review, committee administration, and guideline development, so that questions about these issues do not detract from the science. [Guideline developers]… must be aware of the many, varied observers who will consider their development processes, particularly when their recommendations are likely to be controversial.”

And in a recent study in Archives of Internal Medicine, researchers found that out of 4,200 IDSA guideline recommendations, more than half were based on no more than expert opinion and anecdote, not hard evidence, reinforcing points made in our film. (See references below.)

So, as investigative news organizations and documentary film producers — with the help of the Physicians Sunshine Act — begin to shine the light on endemic commercial influences on “evidence-based medicine,” it’s a wake up call to the medical establishment to clean up their own act before attacking outside organizations dedicated to protecting the public.

In other words, don’t shoot the messenger.
____________________________________

To read more about past IDSA efforts to censor dissenting opinions

Personal information and stolen credit card numbers offered for sale

Asher Moses, April 29, 2011:

Personal information and credit card numbers stolen from Sony's PlayStation Network in one of the world's largest privacy breaches are reportedly being offered for sale on underground internet forums.

Police and banks have said they have yet to discover a case of an Australian being defrauded as a result of the Sony breach, however, it has been less than two weeks since the attack and potential victims are being warned that they will have to be on their toes for some time to come.

Kevin Stevens, senior threat researcher at the security firm Trend Micro, was one of several experts who told The New York Times that he had seen talk of the hacked database on several hacker forums.

The researchers said the attackers were hoping to sell a database that included Sony customer names, addresses, usernames, passwords and millions of credit card numbers.
The credit card list alone was listed for upwards of $100,000 and the hacker had allegedly offered to sell the database to Sony, however, did not receive a response.

"It's hard to verify at this stage. The theft of credit cards is certainly the worst case scenario, any users potentially affected should be on the look out," said Colin Jacobs, chair of the online users' lobby group Electronic Frontiers Australia.

"Luckily, it's relatively easy to get a new credit card number. The same isn't true about your name, address and date of birth, so PSN customers are going to have to be on the lookout for a long time to come. Read more>>

Thursday, April 28, 2011

Professor, Have you got Goldfish Memory Syndrome?


A recent study revealed that a third of PACE trial psychiatrists can't remember their own phone number or recall the birthdays of just three of their close CBT relatives. And it’s all down to the toe-curlingly embarrassing PACE trial.

It’s a type of brain dysfunction,’ says Toshiyuki Sawaguchi, professor of neurobiology at Japan’s Hokkaido University, who led the study.

The brain’s short-term storage capacity of PACE trial psychiatrists is small; it can hold about one independent item at a time. Hence the problem with conducting a ME PACE trial including ME patients.

Read more>>

After three decades, it’s beyond time that the CDC and the NIH find the cause / the infectious agent

CFS Central:

The most compelling case for an infectious ME/CFS etiology may be the family of Keith Baker.

Now 41, Baker was 16 when he suddenly became ill. At the time, Baker was a high-school track star and Junior Olympic metal winner in Waterville, Maine. As he testified to the Chronic Fatigue Syndrome Advisory Committee, “I was running a race and suddenly I could not put one foot in front of the other. I stopped in the middle of my race and knew something was terribly wrong with me.”

Baker was diagnosed with mono the next day and came down with chicken pox a week later. Next, his 12-year-old brother got chicken pox and mother became ill with shingles (a reactivation of the chicken pox virus) and Bell's palsy.

When his adult sister came to visit, she too got sick. And when Baker and his brother visited their father—his parents were divorced—his father became ill as well. In a matter of months, everyone in the family was sick with ME/CFS.

Today Baker still has ME/CFS, as do the rest of his family. Baker hasn’t been able to run since he first became ill. His wife is healthy, but their two children have high-functioning autism, and the elder child also has seizures. Of all the family members, Baker’s brother is the most severely affected with ME/CFS.

Genetics can’t explain this entire family coming down with ME/CFS, because ... Read more>>

See also: PACE trial results are out: ME is caused by an oncogenic virus or The putative agent of ME/CFS can be transferred to monkeys

Why Dr Swan will interview a psychiatrist for relevant diagnosis and treatment on prostate cancer

Bernie :
26 Apr 2011 6:21:13pm



Dr Norman Swan shows the same bias he has always maintained over several years of reporting on ME/CFS, both on radio and TV. Therefore it is unlikely we will see a differing point of view ie a medical one, aired on his program.

I suggest that the next time Dr Swan reports on prostate cancer he interviews a psychiatrist for relevant diagnosis and treatment of this condition.

Bed-bound for the past 14 years but there’s nothing being done for these people thanks to silly CBT psychiatrists

by Kim Briscoe
Tuesday, April 26, 2011:


Kerry Newnham is just 34, but has spent the past 14 years of her life bed-bound in a darkened room because of severe ME.

She was a bright student, very active in sport, playing the flute and piano and wanted to teach, travel and do charity work.

She began having pains in her legs when she was 15, but just before she turned 16 she had exams, a two-week hill walking holiday and two weeks in bed after a viral-type illness and after which she was never well again.

Throughout sixth form there was non-stop deterioration and despite the constant tiredness Kerry still managed to secure a place at university in Leeds to study English and music.

She struggled through her first year, but in the end had to give it up because her health became so poor.

Kerry is now bed-bound and stays in a darkened room in her home at Shaftesbury Court in Lowestoft because she is sensitive to the light and to too much stimulus.

Her mother Angela, from Gunton Drive, Lowestoft, said: “When people meet Kerry for the first time, health professionals and carers are really quite shocked at the impact the illness has had on her.

“It has had a devastating impact on her life and she hasn’t really got any quality of life.

“She’s not able to watch TV or read a book or do anything. She can’t have anyone site with her or talk to her because she can’t cope with that sort of stimulation.

“We washed her hair about six months ago because she hadn’t had it done for a year, but it made her even more ill. She hasn’t had a bath now for a year and half.”

Kerry is too ill to be interviewed in person or by telephone by the EDP, but said in an email: “No talk of management or warned that serious in the early years. That was my downfall.

“Took 18 months to get diagnosis and then reassured would just go away. Always told to get on with it & must push myself despite almost constant malaise / tiredness.

“Had doctor, four years in, almost persuade me it was psychological and had to stop looking for physical cause. Advised to work through fatigue even though had had to leave uni after one very difficult year & was housebound & hugely struggling cognitively.

“Too ill to visit specialists and no GP support/ advice so exhausted myself trying unproven alternative therapies, even travelling to them.

Resulted in profound disability, especially & distressingly cognitively.

“No-one including myself, could not believe what had happened to me, gradually deteriorated to this: kept alive with tube feeding. Can only speak the odd word / sentence now and then so communication is through signing / typing or a speech aid. Curtains always drawn. Can’t cope with visitors or adequate personal care. Had hair washed recently for first time in a year - made worse & now have to be helped onto a bedpan. My most distressing symptom is cognitive dysfunction and confusion, loss of sense of self and profound problems thinking /seeing /imagining etc. My brain feels smashed & I’m stimulation intolerant.”

The severity of ME came to public prominence after Kay Gilderdale was cleared of her daughter Lynn’s attempted murder in January last year.

Lynn, 31, had injected herself with morphine in December 2008 after being bedridden with ME for 17 years. Having discovered her daughter’s failed overdose, Kay gave Lynn more drugs when she feared she would be brain damaged.

Mrs Newnham, 57, said Kerry had two or three text pals, and one of them had been Lynn.

She said: “It affected her terribly badly when Lynn died. There are ever so many similarities between them, but Kerry isn’t in pain like Lynn was.

“But she gets so she doesn’t want to carry on sometimes, it’s so depressing.

“She just needs something to give her a chance to get better. I don’t think it’s going to happen when there’s nothing being done for these people at the moment. This research could be a lifeline." Read more>>

Better care for ME, so no more silly CBT, is a step closer in Norfolk

by Kim Briscoe
Tuesday, April 26, 2011:


Plans to conduct pioneering research in Norwich into a debilitating illness are a step closer – as is securing better care for Norfolk and Suffolk’s most seriously ill ME patients.

National charity Invest in ME is working towards funding research into myalgic encephalomyelitis (ME) in Norwich.

At the same time NHS Norfolk, alongside NHS Suffolk and NHS Great Yarmouth and Waveney, wants to harness some of the expertise the charity will bring to Norfolk to offer a better service for patients, many of whom have been bed-bound for years, with little hope of getting better.

Invest in ME first unveiled its wish to conduct research in Norwich almost a year ago. It now says that almost all of the pieces are in place to allow this to start. Read more>>

The meeting agenda for The federal CFS Advisory Committee May 10-11


CFSAC Spring 2011 Meeting (May 10-11) - Agenda
Chronic Fatigue Syndrome Advisory Committee
US Department of Health and Human Services

Room 800, Hubert H. Humphrey Building
200 Independence Ave, S.W.
Washington, D.C. 20201

Agenda -- CFSAC Spring 2011 Meeting (May 10-11)

May 10, 2011

2:35 p.m. : Anti-Viral Treatments Dr. Martin Lerner

Read more>>

Major ME/CFS training seminar for medics, nurses and medical students in Liverpool on June 1

by tonybritton on April 28, 2011:

Liverpool ME Support Group has been busy these past few months turning an old adage on its head about UK doctors not believing in ME – with 45 doctors, consultants and other healthcare professionals so far booked in for a training seminar at the 174-year-old Liverpool Medical Institution at Mount Pleasant.

The event will be held on Wednesday, June 1.

“We’ve got 129 seats in the room and at the moment I want to hold them open for medics, nurses and medical students”, said group chairman Mrs Dorothy O’Rourke. “So far we have 45 places taken after the initial invitation was sent out. We’ll be back on the trail after this bank holiday weekend; I’d like to see many more young doctors and trainee doctors there.”

Staff from the local NHS ME/CFS service together with other specialists in infectious and communicable diseases and paediatrics have already booked in to quiz seminar speakers Professor Malcolm Hooper, emeritus professor in medicinal chemistry at Sunderland (who will be chairing this year’s Invest in ME conference on May 20), Dr Irving Spurr (a Bishop Auckland GP with over 20 years experience of running ME clinics and involvement in ME research) and chairman of Chester and Wirral ME Self-Help Group Joan Crawford, who is working on an MA in clinical counselling.

“For years, patients with ME have been hearing stories about how there is no provision in the curriculum for medical education in this illness and that there no plans to change this”, said Mrs O’Rourke, both of whose adult children suffered from the illness when they were younger. “We very much hope that seminar will be a step in the right direction, and stimulate interest in the subject”.

The seminar has been set up with the help of a £4,500 grant from Liverpool Charity and Voluntary Services, which will also pay for additional work to be carried out at the city’s Neurosupport Centre – details of which will be announced later.

Admission will be free and the event will open at 6.30pm when there will be a hot buffet. The lectures will begin at 7.20pm and the evening is expected to finish by 9.30pm. Spaces in the university car park nearby are available on request when registering.

To register, please phone Dorothy O’Rourke on 0151 722 2471 or email liverpool_me2@yahoo.co.uk

Why the psyche school have been purposefully obfuscating the facts

PACE is Dead. Kevin Short:

Dear All,

In my view, in relation to the PACE trial into 'CFS/ME'[1] and some subsequent supportive publications, it is timely for the ME community and interested observers to consider three questions and revisit some previously published material for possible answers.

The first question is, just why do certain UK psychiatrists apparently refuse to adhere to WHO taxonomy as per ICD-10-G93.3 neurological ME/PVFS and ICD-10-F.48.0 psychiatric FATIGUE SYNDROME respectively by erroneously conflating what the WHO and an increasing body of biomedical evidence rightly separate? (That, according to some such psychiatrists, 'CFS/ME' is allegedly and primarily both physical and psychiatric and that most illnesses are comprised of both such primary components is often cited as justification: an unlikely assertion if, for example, applied to lung-cancer or HIV/AIDS. Like cancer and AIDS patients, ME sufferers do not object to secondary/co-morbid psychiatric complications being addressed for what they are. They do however object to primary physical illness being misrepresented and mistreated as psychiatric. Such misrepresentation of primary physical illness in the case of cancer and AIDS would rightly be dismissed as ludicrous by most informed people and ditto should be the case for ME.)

Perhaps in no small part the answer is to be found in earlier published comment. In this case the 2006 UK Parliamentarian Group on the Scientific Research into ME (GSRME) which, in connection with such psychiatrists' role in advising the UK Department of Work and Pensions (DWP) on ME/CFS, cautioned:
"There have been numerous cases where advisors to the DWP have also had consultancy roles in medical insurance companies. Particularly the Company UNUM Provident. Given the vested interest private medical insurance companies have in ensuring CFS/ME remain classified as a psychosocial illness there is blatant conflict of interest here. The Group find this to be an area for serious concern and recommends a full investigation of this possibility by the appropriate standards body. It may even be that assessment by a medical `expert' in a field of high controversy requires a different methodology of benefit assessment."
- GSRME Report, Page 30. See:
www.erythos.com/gibsonenquiry/index.html

The second question is, how on earth does so much psychiatric 'research' that is poorly-conceived, of questionable-quality and undertaken by investigators with demonstrable conflicts of interest receive so much funding and peer-reviewed journal exposure?

Again, in no small part, perhaps the explanation is to be found in earlier published comment. In this case taken from the introductory summary of Professor Bruce Charlton's 2008 peer-reviewed paper entitled 'Zombie Science – a sinister consequence of evaluating scientific theories purely on the basis of enlightened self-interest':

"Although the classical ideal is that scientific theories are evaluated by a careful teasing-out of their internal logic and external implications, and checking whether these deductions and predictions are in-line-with old and new observations; the fact that so many vague, dumb or incoherent scientific theories are apparently believed by so many scientists for so many years is suggestive that this ideal does not necessarily reflect real world practice. In the real world it looks more like most scientists are quite willing to pursue wrong ideas for so long as they are rewarded with a better chance of achieving more grants, publications and status."

"The classic account has it that bogus theories should readily be demolished by sceptical (or jealous) competitor scientists. However, in practice even the most conclusive `hatchet jobs' may fail to kill, or even weaken, phoney hypotheses when they are backed-up with sufficient economic muscle in the form of lavish and sustained funding. And when a branch of science based on phoney theories serves a useful but non-scientific purpose, it may be kept-going indefinitely by continuous transfusions of cash from those whose interests it serves. If this happens, real science expires and a `zombie science' evolves."

In seeking examples of such 'zombie science', in my opinion, few contenders can match the recent UK PACE trial study by Professor Peter White et al published in The Lancet that was rightly, and eruditely, criticised by Professor Malcolm Hooper. Outside of the usual supporters, The Science Media Centre and what many would regard as misinformed converts, PACE is widely viewed as a disgrace: having conflated illness rightly separated by the WHO, having effectively ignored a large body of biomedical evidence, having used unscientific and disingenuous patient selection criteria, and having almost exclusively employed subjective and highly unreliable measurement techniques. See:
http://www.meactionuk.org.uk/COMPLAINT-to-Lancet-re-PACE.htm

With PACE etc in mind, Professor Charlton's 'Zombie Science' critique paper is well worth reading in full. The reference & link for the full text of the paper is:
Professor Bruce Charlton – Zombie Science – a sinister consequence of evaluating scientific theories purely on the basis of enlightened self-interest, Medical Hypotheses (2008) 71 327-329, DOI: 10.1016/j.mehy.2008.05.018:
http://medicalhypotheses.blogspot.com/2008/07/zombie-science-dead-but-wont-lie-down.html

If the psychiatrists involved in the PACE trial were serious about science, and genuinely believed ME was maintained by fear of activity and muscle deconditioning, they would have exclusively used rigorous and internationally accepted patient selection criteria. They did not. If they were serious about science they would have applied objective assessment criteria to properly informed patients. They did not. In my view PACE represents a gross abuse of the scientific process and a gross abuse of ME patients. Ditto for much of the largely rhetorical and uncritical literature supportive of PACE that, unlike the many patient protestations such as this article, find their way into the so-called scientific literature. From its inception, PACE was roundly and eruditely criticised as being seriously flawed, that it was publicly funded amounts to a gross abuse of millions of pounds of UK taxpayers' money.

In terms of the real-world clinical setting amongst real-world ME patients, I believe the full scientific evidence-base shows that PACE CBT/GET will ultimately contribute nothing positive. It will not improve ME patient function in the medium to long term, if at all, and will eventually be seen by most as having been dead on arrival and a complete waste of money: Zombie therapies based upon Zombie science. Moreover, I believe that most of the PACE PIs actually know this. If so, my third question is what then could be the real purpose of PACE? Professor Charlton's following observation seems to me to answer that question perfectly:

"If zombie science is not scientifically-useable – what is its function? In a nutshell, zombie science is supported because it is useful propaganda to be deployed in arenas such as political rhetoric, public administration, management, public relations, marketing and the mass media generally. It persuades, it constructs taboos, it buttresses some kind of rhetorical attempt to shape mass opinion. Indeed, zombie science often comes across in the mass media as being more plausible than real science; and it is precisely the superficial face-plausibility which is the sole and sufficient purpose of zombie science."

In my opinion PACE is an issue for more than just ME patients. It is an affront to British science and British society.

Anglia ME Action.
April 2011.
contact@angliameaction.org.uk

[1] Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial; PD White et al; published online February 18, 2011 DOI:10.1016/S0140-6736(11)60096-2.

- Message Ends - Permission to Repost -

The deadly DIY tan injection


By John Naish, on 28th April 2011:

Starved of sunshine over the winter and desperate for a healthy glow, Terri Sotherton, 21, sat at her computer screen four weeks ago looking for a cheap and easy way to get a perfect all-over tan.

She didn’t have to look far. Type the words ‘quick tanning’ into Google and the first three online companies to come up offer cheap deals on tanning accelerators in the form of creams, pills — and even injections.

Terri, from Bolton, bought three doses of a product called Melanotan for £25. On the website, it was claimed these one-milligram injections would make her browner faster than if she went on a sunbed or sunbathed.

But this online shopping trip ended in the local hospital A&E. ‘I didn’t think about the risks,’ says Terri, a full-time mother to her 18-month-old daughter, Megan. ‘What happened was terrifying.’

The kit she had bought included syringes and vials of Melanotan, but came without instructions. After recalling a friend had used something similar, Terri rang her.
‘She told me to inject myself with one milligram, which I did,’ she says. ‘Looking back, I can’t believe I was so stupid, but I did it without a second thought because at the time all I wanted was a tan without any hassle, just like she had.
‘I didn’t see any effects until two days after the injection. Then bizarre things started to happen. My face became luminous and swollen. It had the strangest green tinge and became hypersensitive. It was itchy, painful and I couldn’t bear to touch it.’
Extremely frightened, she went to A&E at Bolton Hospital and told the doctor what she had done.

‘He had never heard of Melanotan, but went off to research it with their poisons unit,’ she says. ‘When he came back, his face was grave. I started to panic.’
Melanotan contains hormones that increase the levels of the brown pigment melanin in the body.

In December 2008, the drugs watchdog, the Medicines and Healthcare Products Regulatory Agency (MHRA), outlawed the product, which has earned the nickname ‘jabba-tan’, after finding it causes skin discoloration, stops the healing process and lowers the immune system so dramatically that patients have got meningitis.
Yet, as Terri proved, you can still obtain it easily on the internet. While its sale is banned in Britain, it is not illegal to buy or possess it.
Read more>>

The UK PACE trial: its zombie science is an affront to science and society

PACE is Dead. Kevin Short:

Dear All,

In my view, in relation to the PACE trial into 'CFS/ME'[1] and some subsequent supportive publications, it is timely for the ME community and interested observers to consider three questions and revisit some previously published material for possible answers.

The first question is, just why do certain UK psychiatrists apparently refuse to adhere to WHO taxonomy as per ICD-10-G93.3 neurological ME/PVFS and ICD-10-F.48.0 psychiatric FATIGUE SYNDROME respectively by erroneously conflating what the WHO and an increasing body of biomedical evidence rightly separate? (That, according to some such psychiatrists, 'CFS/ME' is allegedly and primarily both physical and psychiatric and that most illnesses are comprised of both such primary components is often cited as justification: an unlikely assertion if, for example, applied to lung-cancer or HIV/AIDS. Like cancer and AIDS patients, ME sufferers do not object to secondary/co-morbid psychiatric complications being addressed for what they are. They do however object to primary physical illness being misrepresented and mistreated as psychiatric. Such misrepresentation of primary physical illness in the case of cancer and AIDS would rightly be dismissed as ludicrous by most informed people and ditto should be the case for ME.)

Perhaps in no small part the answer is to be found in earlier published comment. In this case the 2006 UK Parliamentarian Group on the Scientific Research into ME (GSRME) which, in connection with such psychiatrists' role in advising the UK Department of Work and Pensions (DWP) on ME/CFS, cautioned:
"There have been numerous cases where advisors to the DWP have also had consultancy roles in medical insurance companies. Particularly the Company UNUM Provident. Given the vested interest private medical insurance companies have in ensuring CFS/ME remain classified as a psychosocial illness there is blatant conflict of interest here. The Group find this to be an area for serious concern and recommends a full investigation of this possibility by the appropriate standards body. It may even be that assessment by a medical `expert' in a field of high controversy requires a different methodology of benefit assessment."
- GSRME Report, Page 30. See:
www.erythos.com/gibsonenquiry/index.html

The second question is, how on earth does so much psychiatric 'research' that is poorly-conceived, of questionable-quality and undertaken by investigators with demonstrable conflicts of interest receive so much funding and peer-reviewed journal exposure?

Again, in no small part, perhaps the explanation is to be found in earlier published comment. In this case taken from the introductory summary of Professor Bruce Charlton's 2008 peer-reviewed paper entitled 'Zombie Science – a sinister consequence of evaluating scientific theories purely on the basis of enlightened self-interest':

"Although the classical ideal is that scientific theories are evaluated by a careful teasing-out of their internal logic and external implications, and checking whether these deductions and predictions are in-line-with old and new observations; the fact that so many vague, dumb or incoherent scientific theories are apparently believed by so many scientists for so many years is suggestive that this ideal does not necessarily reflect real world practice. In the real world it looks more like most scientists are quite willing to pursue wrong ideas for so long as they are rewarded with a better chance of achieving more grants, publications and status."

"The classic account has it that bogus theories should readily be demolished by sceptical (or jealous) competitor scientists. However, in practice even the most conclusive `hatchet jobs' may fail to kill, or even weaken, phoney hypotheses when they are backed-up with sufficient economic muscle in the form of lavish and sustained funding. And when a branch of science based on phoney theories serves a useful but non-scientific purpose, it may be kept-going indefinitely by continuous transfusions of cash from those whose interests it serves. If this happens, real science expires and a `zombie science' evolves."

In seeking examples of such 'zombie science', in my opinion, few contenders can match the recent UK PACE trial study by Professor Peter White et al published in The Lancet that was rightly, and eruditely, criticised by Professor Malcolm Hooper. Outside of the usual supporters, The Science Media Centre and what many would regard as misinformed converts, PACE is widely viewed as a disgrace: having conflated illness rightly separated by the WHO, having effectively ignored a large body of biomedical evidence, having used unscientific and disingenuous patient selection criteria, and having almost exclusively employed subjective and highly unreliable measurement techniques. See:
http://www.meactionuk.org.uk/COMPLAINT-to-Lancet-re-PACE.htm

With PACE etc in mind, Professor Charlton's 'Zombie Science' critique paper is well worth reading in full. The reference & link for the full text of the paper is:
Professor Bruce Charlton – Zombie Science – a sinister consequence of evaluating scientific theories purely on the basis of enlightened self-interest, Medical Hypotheses (2008) 71 327-329, DOI: 10.1016/j.mehy.2008.05.018:
http://medicalhypotheses.blogspot.com/2008/07/zombie-science-dead-but-wont-lie-down.html

If the psychiatrists involved in the PACE trial were serious about science, and genuinely believed ME was maintained by fear of activity and muscle deconditioning, they would have exclusively used rigorous and internationally accepted patient selection criteria. They did not. If they were serious about science they would have applied objective assessment criteria to properly informed patients. They did not. In my view PACE represents a gross abuse of the scientific process and a gross abuse of ME patients. Ditto for much of the largely rhetorical and uncritical literature supportive of PACE that, unlike the many patient protestations such as this article, find their way into the so-called scientific literature. From its inception, PACE was roundly and eruditely criticised as being seriously flawed, that it was publicly funded amounts to a gross abuse of millions of pounds of UK taxpayers' money.

In terms of the real-world clinical setting amongst real-world ME patients, I believe the full scientific evidence-base shows that PACE CBT/GET will ultimately contribute nothing positive. It will not improve ME patient function in the medium to long term, if at all, and will eventually be seen by most as having been dead on arrival and a complete waste of money: Zombie therapies based upon Zombie science. Moreover, I believe that most of the PACE PIs actually know this. If so, my third question is what then could be the real purpose of PACE? Professor Charlton's following observation seems to me to answer that question perfectly:

"If zombie science is not scientifically-useable – what is its function? In a nutshell, zombie science is supported because it is useful propaganda to be deployed in arenas such as political rhetoric, public administration, management, public relations, marketing and the mass media generally. It persuades, it constructs taboos, it buttresses some kind of rhetorical attempt to shape mass opinion. Indeed, zombie science often comes across in the mass media as being more plausible than real science; and it is precisely the superficial face-plausibility which is the sole and sufficient purpose of zombie science."

In my opinion PACE is an issue for more than just ME patients. It is an affront to British science and British society.

Anglia ME Action.
April 2011.
contact@angliameaction.org.uk

[1] Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial; PD White et al; published online February 18, 2011 DOI:10.1016/S0140-6736(11)60096-2.

- Message Ends - Permission to Repost -

Dr Richard Horton: The Lancet, like all medical journals, distorts medicine

Dr Richard Horton:
richard.horton@lancet.com

The Lancet, like all medical journals, distorts medicine.
How so? Find out in this week's The Lancet

Wednesday, April 27, 2011

Royal College backtracks on its statement that ME is psychological

by tonybritton on April 27, 2011:

The Royal College of Paediatrics and Child Health has reaffirmed its belief that ME/CFS is a biological illness and disowned a statement made to the recent mini-review of the NICE Guideline on ME/CFS that it is “a psychological illness with physical manifestations” with clinical experience suggesting that the incidence “appears to be falling in children and young people”.

In a letter sent to the Countess of Mar on 21 April, Cambridgeshire paediatrician Dr David Vickers – a member of the Royal College’s ‘President’s Advisory Group’ – writes:

“I have reviewed our submission to the NICE consultation and can confirm this comment was from one individual who assisted in our response. As such it does not represent RCPCH policy, and in retrospect should not have been included. The phrase ‘as a psychological illness with physical manifestations’ was unhelpful.”

Lady Mar, who chairs the Forward ME Group of ME charities and patient support groups, gave permission for the letter to be released today after she has raised the issue with Care Services Minister Paul Burstow and Mary-Jane Willows, chief executive of the Association for Young People with ME, had raised it directly with the Royal College.

Full text of the letter from Dr Vickers to the Countess:

21 April 2011

Dear Lady Mar

The Chief Executive of AYME has forwards us a copy of your letter of 5 April 2011 to Paul Burstow in which you express concern about the RCPCH response to NICE on their consultation on possible revisiom of guidelines on CFSME. In our response we stated that “Regarding the epidemiology of chronic fatigue syndrome: as a psychological illness with physical manifestations, clinical experience suggests that the incidence appears to be falling in children and young people.

As our President stated in his latter dated 25 February 2011, RCPCH views CFSME as a biological illness and continues to stand by its own guidelines issued in 2004. I have reviewed our submission to the NICE consultation and can confirm this comment was from one individual who assisted in our response. As such it does not represent RCPCH policy, and in retrospect should not have been included. The phrase “as a psychological illness with physical manifestations” was unhelpful.

My prime reason for writing is to reassure you RCPCH continues to view this condition as a biological illness, which benefits from expert multidisciplinary management.

I am aware that these comments have caused some concern, and hope that this letter reassures you that our position has not altered.

Yours sincerely

Dr David Vickers

The Royal College of Paediatrics and Child Health was one of a couple of dozen organisations who made brief representations when NICE (the National Institute for Health and Clinical Excellence) invited them to comment last November on whether there was a need for a a major review on their August 2007 Guideline on ME/CFS.

The comments were published in summary form by NICE and this document can be viewed HERE:
http://www.nice.org.uk/nicemedia/live/11824/53853/53853.pdf?forumid=331851

Towers paper saying XMRV/HGRVs were contamination proved wrong

by Wildaisy Fl on Tuesday, April 26, 2011:

The Towers paper argued that because they found identical integration sites, XMRV/HGRV had to be contamination. However, this Selten 1986 paper shows that they identified independent integrations by a retrovirus at the same nucleotide position.



Here is the belief stated in Garson, Kellam and Towers:

Quote

With the exception of a single early publication on avian sarcoma-leukosis virus, which was refuted by later work [10], sequencing studies of thousands of retroviral integration sites have to our knowledge never identified exactly the same site twice. It therefore appears very unlikely that the sites illustrated in Figure 1 are the result of independent integrations into identical genomic locations in a prostate tumour in vivo and an experimentally infected cell line in vitro, on two separate occasions.



Selton et al 1986 therefore shows that Garson et al's "knowledge" was incomplete, as independent integrations by a retrovirus - in fact, an MLV - have been shown to occur at the same nucleotide position. Therefore the fact that they found identical integration sites does not in itself argue for contamination; the improbability argument they made has to be seen as weakened if not destroyed.



Quote

Integration in lymphomas 10 and 17 occurred about 140 nucleotides downstream of the pim-1 coding region at the same nucleotide position (Figures 3 and 4) whereas the provirus in lymphoma 34 was integrated 3 nucleotides further downstream from this latter site (Figures 3 and 4). This result shows that within this region integration is nonrandom.



You can see the integration sites in Fig. 4. Not only were the proviral insertions from tumors 10 and 17 at the same nucleotide, but the one for tumor 34 occured only 3 base pairs down. Two more (32 and 54) are only a few bp apart from one another as well (and aren't that far upstream of those other three).





Reference:



Garson, Kellam and Towers (2011): http://www.mecfsforums.com/index.php/topic,6572.msg76501.html#msg76501

Towers et al, 2011, No XMRV in HIV patients in London. PLoS One, March 2011 | Volume 6 | Issue 3 | e18096



Selten 1986: primary structure of the putative oncogene pim-1: http://www.mecfsforums.com/index.php/topic,7002.new.html#new;

Shen-Ong, G. L., M. Potter, J. F. Mushinski, S. Lavu, and E. P.

Reddy. 1984. Activation of the c-myb locus by viral insertional

mutagenesis in plasmacytoid lymphosarcomas. Science

226:1077-1080.

See full discussion here: http://www.mecfsforums.com/index.php/topic,6994.0.html

Kathryn Stephens: MY CFSAC TESTIMONY (In Person, May 11, 2011 at 1:15 p.m.)

by Kathryn Stephens on Tuesday, April 26, 2011:

TO: President Barack Obama; Sec. Kathleen Sebelius, DHHS; Dir. Francis Collins, NIH;
Chairman Christopher Snell, M.D., and all Committee Members and Federal Agencies representatives attending today.
--
My name is Kathryn Stephens. Thank you for this five minutes.

You'll notice Young People with ME here today. I brought my 23 year old granddaughter with me. Just as I was (unknowingly) coming down with ME, I took care of her for the first five weeks of her life. Infectious? Transmissible? I'd say yes. Her illness began at age nine with severe GI issues, then "mono" at age 14 which became "chronic" by 15. She missed the last 2 years of high school, confined to a darkened bedroom with very little care and no treatment. She has now lived with me for two years, still mostly confined to her dark room, unable to care for herself without my help.

My partner of 27 years got ME seven years after I did. Infectious? Transmissible? I'd say yes.

I want ACTION on adopting the Canadian definition (CCC). I want ACTION for patients to be allowed appropriate testing for viral and infectious co-factors/causes of their illness. I want Internal Medicine and Infectious Disease doctors trained with the CCC. (The CDC denies this for their patients under their "CFS" construct.) I want all patients given the diagnosis of CFS be be re-evaluated according to the CCC and put into the appropriate ME or CDC-defined "CFS" categories. We have a basic human right to an appropriate name for our illness

EBV, HHVs 4-8, CMV, XMRV and various Mycoplasmas have been implicated: I want all the viral panels and immune system factors investigated, and my family wants these now. To this end, I suggest CFS patients be seen in Infectious Disease clinics immediately, with the same benefits of Medicare -and –Medicaid- covered expenses, as are the HIV/AIDS patients. I want compassionate care meds available to them, as are for HIV/AIDS patients. To do less violates our human rights and is criminal patient neglect.

To do this, I want the NIH to designate $200M dollars, with $150M going to the existing clinics performing these services already: the WPI, the UofMiami, Stanford's Dr. Jose Montoya, and to others needing funding to open. The other $50M should be used to pay for the re-evaluation of all diagnosed CFS patients at Infectious Disease clinics nationwide (they could also be enrolled in studies to publish the results of all this testing).

I would like the CDC's CFS program shut down; mental illness does not belong in the Infectious Diseases and Pathogens department. The NIH should take charge of ME at once.

I want urgent new training tools for American physicians, including VA physicians, using the CCC, in order to get patients diagnosed correctly now, and in the future.

CFSAC Committee members, I thank you for your service; however, have you gone to YOUR Congressional Reps about the epidemic (nay, pandemic) of ME? Have you, as a group, ever requested an urgent meeting with any of the current or past Secretaries at DHHS, when the Recommendations have not been addressed? I daresay, if you or a family member gets this illness, you would not be as polite as we have been, as polite as you are still asking us to be. Be prepared for less of that.

Thank you.

Protease blocker telaprevir does an amazing job clearing the virus

usatoday.com:

WASHINGTON – Federal health officials said Tuesday a highly anticipated hepatitis C drug from Vertex Pharmaceuticals successfully treats the majority of patients with the virus in less time than older medicines that have been used for 20 years.

The Food and Drug Administration posted its review of Vertex's telaprevir ahead of a meeting Thursday where outside experts will vote on the benefits of the experimental drug. On Wednesday the experts will review a similar drug from Merck & Co. Inc.
Both new drugs work by blocking the enzyme protease, which allows the hepatitis virus to reproduce. The new approach represents a breakthrough from older medicines, which are designed to help boost the immune system to fight hepatitis.

Like HIV drugs, the new drugs will be prescribed as part of a cocktail with the two older drugs to help lower viral levels.

"A drug like telaprevir does an amazing job clearing the virus, but there's a small portion that is just intrinsically less responsive and it's the job of the older drugs to clear up that mess that's left behind," said Dr. Cailla Graham, Vertex's vice president for global medical affairs.

The current two-drug treatment for the virus cures only about 40% of people and causes side effects like nausea, fatigue and vomiting.

FDA scientists said 79% of first-time hepatitis C patients taking telaprevir and the older medicines were cured, compared to 46% of those taking the older medications alone, according to Vertex's studies. Among patients who had already been treated for hepatitis C once, 65% achieved a cure after taking telaprevir, compared with 17% of those taking the older medications.

In general, telaprevir's cure rates are higher than those seen with Merck's boceprevir. The two drugs are expected to compete in a multibillion dollar global market. Read more>>

How to Get Your Prescriptions for Free

by Fibromyalgia Network on Thursday, April 14, 2011:

By Richard N. Podell, M.D., M.P.H.
April J. is a 33 year old single mother with severe fibromyalgia. She called me crying last week because she can’t afford the Cymbalta I prescribed—her health insurance plan doesn’t cover drugs. I’d given her 4 weeks of samples, which had reduced her average pain score from an 8 of 10 down to a 4.

I’m posting today to be sure that everyone knows about the pharmaceutical industry programs that provide free medications for people who lack insurance that covers meds and have “relatively” low annual income—even up into the $30-40,000 range.

The easiest source: go to pparx.org, the website of Prescription Assistance Program. Or call them at 1-888-477-2669. Pparx.org tracks more than 400 public or private programs that cover more than 4,000 different drugs. So you can use it for any health issue, not just fibromyalgia.

There is no charge for this service. (Other websites also keep lists, but some charge for referral.)

When I went to pparx.org this week, the Cymbalta was listed but there was nothing for Savella. In fact, Savella does have a program, pparx.org just hasn’t caught up.

For the Savella assistance program call 1 800-851-0758 or go to Forest.com/pap (pap stands for patient assistance program).
You can go to Cymablta’s program directly at Lilly.com/responsibility/servingpatients or call 1-800-545-6962.

The Phoenix Rising Letter to CDC's Dr. Unger by Cort Johnson

by Cort, Published on April 25th, 2011:

First we at Phoenix Rising want to congratulate Dr. Unger on your recent appointment as Acting Chief of the Chronic Viral Diseases Branch at the CDC. We realize that you assume this position during very challenging times when relations with the ME/CFS patient community are at an all-time low and trust and respect for the CDC is almost non-existent.

We firmly believe, however, that we are also at a crossroads and you have been given a unique opportunity to rebuild that trust by bringing fresh perspectives and creating open communication within the ME/CFS scientific, professional and patient communities. We fully support you in that endeavor.

Name - We request that the CDC recognize that CFS or ME/CFS is a worldwide disorder; that CFS is referred to as ME or ME/CFS in many countries outside the United States, and that several major organizations inside the US, including the IACFS/ME and NIH, now refer to CFS as ME/CFS. We request that the CDC put ‘CFS’ in its proper geographical and historical context by referring to it as ME/CFS.

Definition - We request that you abandon the Empirical Research Definition and utilize the expertise of the ME/CFS research communty to create the criteria for a new definition. We also request that you attempt to resolve the substantial gulf between the CDC’s interpretation of CFS and the interpretation of a substantial part of the ME/CFS research community, by investigating the effectiveness of using post-exertional relapse (post-exertional malaise) to differentiate chronic fatigue syndrome from other disorders.

Collaborate - The key recommendation from the CFSAC, IACFS/ME and CFIDS Associaton of America, at the public hearing regarding the 5 year strategic draft plan, was that the CDC collaborate more. We recommend that you work with the ME/CFS research community to identify and fill gaps in research. We request that you investigate the possibility of being part of a coherent International ME/CFS research effort that utilizes standardized protocols, identifies research opportunities, provides expertise across institutional boundaries and shares data and samples. We request that you become a partner with and actively support the CFIDS Association Research Network and the Whittemore Peterson Institute Biobank.

Communicate - The CDC-funded media and physician education campaigns were designed to alter the public’s perception of ME/CFS but ignored the CDC’s disastrous relations with its core constituency - the patients. We assert that regular communication with the patient community would allow both the CDC’s and the patient community’s needs and aspirations to be evaluated in a more neutral light - creating the opportunity for discussion and movement rather than the friction that currently characterizes the relationship. We request that you participate in regular meetings with members of the patient community. Read more>>

Most fatalities from ME/CFS are put down to organ failure

Chalpat Sonti, watoday.com.au:

There are no reliable statistics as to how many people die from ME/CFS, with most fatalities put down to organ failure. Her mother and full-time carer, Carol Adams, puts it bluntly.

"Is my daughter going to die because we can't give her the medicines she needs?" she said.

"It breaks my heart that she's lost her life. I've been told Theda's at the same level AIDS sufferers are (at) two weeks before they die."

Read more>>

See also: ME sufferer Theda Myint locked up in a psychiatric unit

Theda's desperate fight against a chronic killer

Chalpat Sonti, watoday.com.au:

Theda Myint had the world at her feet.

Bright, beautiful and vivacious, the budding investigative journalist was weeks away from starting her dream career.

Now, 10 years later, she is fighting for her life.

She is unable to move beyond the confines of her home - and usually not beyond her bedroom, unable to speak for more than a few seconds before getting tired out, unable to tolerate lights or sounds, unable to remember what happened a few minutes previously, unable to live anything like a "normal" life.
"Thank you very much for coming," she tells WAtoday.com.au when visited at her Willetton home.
Saying those few words will leave Theda drained of strength for several days, so strenuous is the effort.

However, she was prepared to go through the torture of having a photograph taken,
because the publicity might help end her torment.

Theda, 34, suffers from a form of myalgic encephalomyelitis, or ME, better known as chronic fatigue syndrome.

Though the two terms actually refer to different diseases, they are usually used interchangeably. But it's a disease that little is known about, and which is often the target of mockery.

But it's no laughing matter to Theda. Her case is severe.

There are no reliable statistics as to how many people die from ME/CFS, with most fatalities put down to organ failure. Her mother and full-time carer, Carol Adams, puts it bluntly.

"Is my daughter going to die because we can't give her the medicines she needs?" she said.

"It breaks my heart that she's lost her life. I've been told Theda's at the same level AIDS sufferers are (at) two weeks before they die."

But treatment has been even less reliable to date. Theda, like many ME/CFS sufferers, has had no joy after years of visiting local GPs, specialists and hospitals.

Most either gave up perplexed, or told her the disease was all in her mind. She even underwent electro-shock therapy and put herself through an exercise regime, which only made matters worse. Read more>>

See also: ME sufferer Theda Myint locked up in a psychiatric unit

Patients whose partners have stuck by them should give their partner an extra-big hug

by Joey Haban, Tue Apr 26th:

People with chronic pain face more than just medical difficulties. An illness or condition that causes chronic pain affects not only the patient, but family, friends, colleagues, and so forth. One of the toughest areas to navigate is a relationship where your partner or spouse is also your caretaker. Patients have to figure out how to hold up their end of the relationship while dealing with their pain, and caretakers can get seriously stressed out, sometimes beyond the point of wanting to maintain the relationship.

It’s no wonder 75% of marriages involving chronic illness or pain end up failing. The best citation I have for this is a seriously depressing page of statistics.+ It’s not hard to see why. Both people envisioned a very different life for themselves and with each other, and some simply can’t deal with the responsibility of being a caretaker. It’s both tragic and forgivable. My doctor once asked me vehemently (and rhetorically) “Do you know how lucky you are to have your husband?” He has seen many chronic pain and illness patients, and seen many of their partners leave the relationship.

Researching the above statistic brought me to another interesting, if heteronormative, study that showed in various patient groups, “female sex was found to be the strongest predictor of divorce or separation in each of the three patient populations.” So, patients whose partners have stuck by them should give their gal or feller an extra-big hug — and if you’re a woman, at least make out a little.

Not surprisingly, much of this comes down to communication. Topics will come up that couples might rather avoid talking about. For example: sex. Often, one of the first things to go for chronic pain patients is the libido, due to medication side effects, body issues, or just the pain itself. It’s very hard to feel amorous when you’re so physically uncomfortable and exhausted, and there is no shame in that. This doesn’t mean it’s fun or easy to talk about, but it’s a whole lot better than just muddling along in bed (or not). Your partner would rather know about all that than wonder whether it’s their fault there’s no fire in your engine.

Many people with invisible pain issues make the effort to appear fine, or “front.” This may mean even your partner doesn’t know how you’re doing from day to day. And, cruelly, the toll it takes can make patients feel even worse. If you are unexpectedly emotional, obnoxious, moody, needy, or however your bad pain days affect you, let your partner know that a wide berth might be a good idea. My husband and I would often fight on Fridays for no clear reason, at a time when I had supposedly gotten over one illness and hadn’t yet been diagnosed with the next. Once we learned why I was a serious wreck by the end of the work week, ... Read more>>

Children hurt by doctors, ARNIE'S medical abuse STORY

ProHealth.com
by Dr. David S Bell, MD, FAAP*
April 27, 2011:


This ME/CFS patient case history is excerpted from Dr. Bell’s book Faces of CFS - Case Histories of Chronic Fatigue Syndrome, published in August, 2000 (downloadable free at www.davidsbell.com). Each case illustrates a different aspect of the illness that he has studied since the ‘Lyndonville Outbreak’ of 1985-1987. And the detective work continues. On May 20, Dr. Bell will present a 25-year research follow-up on Lyndonville patients at the Invest in ME International Conference in London.

___________________

ARNIE'S STORY

A chronic disease robs children of many things, but it should never destroy the life-affirming refuge children find in their home, as it did with a boy named Arnie… because everything about Arnie was typical of CFS - a disease his doctor did not believe existed.

<--->

A week later, the psychiatrist submitted his report to the court. At the end of a lengthy discussion, he unveiled his diagnosis: Munchausen’s syndrome by proxy.

The judge ordered that Arnie be removed from his mother’s custody and placed in a foster home.

He would remain incarcerated and drugged until he was successfully rehabilitated, which chiefly meant renouncing his absurd belief that he was sick.

Read more>>

Angela Kennedy's complaint to the editor of the Lancet, Dr Richard Horton, regarding the PACE trial

COMPLAINT TO THE EDITOR OF
THE LANCET REGARDING THE
PACE TRIAL



I have today (Monday 25th April) emailed the editor
of the Lancet, Richard Horton, with my own
complaint regarding the PACE trial as below



Angela Kennedy



````


Dear Doctor Horton


Further to my email correspondence with one of your
colleagues, Zoe Mullan, about the PACE trial, I am
writing to you to complain, formally, about the
article:

White PD, Goldsmith KA, Johnson AL, et al.
Comparison of adaptive pacing therapy, cognitive
behaviour therapy, graded exercise therapy, and
specialist medical care for chronic fatigue
syndrome (PACE): a randomised trial. Lancet
2011; 377: 823-836.


The PACE trial was subject to a large amount of
concern and objection by advocates for those
diagnosed with ME or CFS, from the beginning of the
study in 2004 and throughout its course.

I was one of those who outlined specific concerns at
the beginning of the trial: and various concerns were
also outlined in response to the publication of the
protocol mid-trial. For evidence of this please see my
own and others comments at:

http://www.biomedcentral.com/1471-2377/7/6/comments/comments


I am writing primarily as the mother and long-term
advocate of a child (now a woman) diagnosed at 13
with ME/CFS, and who has various objective,
medically substantiated organic impairments
(especially neurological and cardiovascular) which
have led to severe disability.

If subjected to PACE-type CBT and GET, she would
be at serious risk of further harm.


There remain a large number of very serious flaws,
problems and discrepancies in this whole study,
including the published article in the Lancet.

I am writing to reiterate the many substantive and
valid concerns raised by Professor Malcolm Hooper in
his complaint to you about this article and the trial
itself, available here:

http://www.meactionuk.org.uk/COMPLAINT-to-Lancet-re-PACE.htm

http://www.meactionuk.org.uk/COMPLAINT-to-Lancet-re-PACE.doc


I am also aware that a large number of valid and
substantive criticisms of the trial have been made in
letter form to the Lancet and have been rejected for
publication.


In addition to the above concerns, I am specifically
gravely concerned about the dangers to patients
caused by the unsafe claims that Cognitive
Behavioural Therapy of the type advocated by White
et al, and Graded Exercise Therapy, are safe
treatments for people diagnosed with Myalgic
Encephalomyelitis/Chronic Fatigue Syndrome, claims
propounded both within the PACE article itself, and
the accompanying editorial.

This has led to similar unsound claims being made
elsewhere. The potential adverse ramifications for
patients of these unsound claims are particularly
serious, and therefore those claims should not have
been made.


Bleijenberg and Knoop, in their Lancet
editorial accompanying the publication
of the PACE article, claim:

"Concerns about the safety of cognitive behaviour
therapy and graded exercise therapy have been
raised more than once by patients' advocacy groups.

Few patients receiving cognitive behaviour therapy
or graded exercise therapy in the PACE trial had
serious adverse reactions and no more than those
receiving adaptive pacing therapy or standard
medical care, which for cognitive behavioural therapy
has already been shown.

This finding is important and should be
communicated to patients to dispel unnecessary
concerns about the possible detrimental effects of
cognitive behaviour therapy and graded exercise
therapy, which will hopefully be a useful reminder of
the potential positive effects of both interventions."



The PACE article itself states:

"Trial findings show cognitive behaviour therapy
(CBT) and graded exercise therapy (GET) can be
effective treatments for chronic fatigue syndrome,
but patients' organisations have reported that these
treatments can be harmful and favour pacing and
specialist health care. We aimed to assess
effectiveness and safety of all four treatments."


The same article concludes:

"Findings from the PACE trial suggest that
individually delivered CBT and GET, when added to
SMC, are more effective and as safe as APT added to
SMC or SMC alone. Patients attending secondary care
with chronic fatigue syndrome should be offered
individual CBT or GET, alongside SMC."


Other parties have repeated these unsafe claims,
informed by the PACE trial. One example of a
newspaper article is that in the Daily Mail, on 18th
February 2011, which claims:


"Got ME? Fatigued patients who go out and exercise
have best hope of recovery, finds study".


A press release from the Science Media Centre about
the trial included various unsound claims of safety
from doctors. Alistair Miller, for example, stated:

"It provides convincing evidence that GET and CBT
are safe and effective and should be widely available
for our patients with CFS/ME".


Derick Wade, as another example, claimed that the
trial:

"...confirms the effectiveness of two treatments, and
their safety. The study suggests that everyone with
the condition should be offered the treatment, and
every patient who wishes to be helped should be
willing to try one or both of the treatments".


In addition to the claim of safety of CBT and GET,
Wade's comment also indicates that patients may be
regarded as recalcitrant (for example, in a context of
welfare support or continued medical support) should
they, quite rationally, dare refuse to 'try' treatments
that actually may be dangerous.



The fundamental problem that needs to be
addressed is that the evidence available shows that,
contrary to the above claims, the PACE trial did not
adequately assess, or even address, safety of CBT
and GET, and this study did not disprove patients
and doctors' valid and substantive concerns regarding
the dangers of CBT and GET.

One major discrepancy of the PACE trial and the
resulting article was the failure to address the
biomedical evidence available detailing serious
organic physiological dysfunction in patients who
receive a 'CFS' or 'ME' diagnosis.

Another is the inadequate treatment of adverse
outcomes within the trial. This is discussed in more
detail in Professor Hooper's document as detailed
above.


I wish to raise specific concerns about
the patient cohort.

Evidence indicates that research cohorts for 'CFS' or
'CFS/ME' appear to be obtained (by those promoting
psychogenic explanations for these conditions) by
excluding patients with signs and symptoms
(especially neurological) found in Myalgic
Encephalomyelitis case descriptions, or indeed other
organic diseases (the 'alternative diagnoses').

The PACE trial used, not just one case criteria to
exclude patients with symptoms and signs of organic
disease from the trial, but three: 'Oxford' (Sharpe et
al, 1991); Reeves et al (2003), and those from the
NICE guidelines (see White et al, 2011: 2).


Of 3158 patients who had been referred to "six
specialist chronic fatigue syndrome clinics in the UK
National Health Service" (White et al, 2011: 2), 1187
patients (over a third) were actually excluded
because they did not actually meet Oxford criteria for
'CFS'.

Confusingly, no figures are given for those meeting
Reeves et al (2003) and NICE exclusionary criteria,
though these are claimed as part of the exclusion
process.

This is possibly because the Oxford criteria
themselves efficiently exclude those with signs and
symptoms of neurological myalgic encephalomyelitis,
to the point that the Reeves and NICE exclusionary
criteria may well have been superfluous.


There are similarities of symptoms and signs of
neurological dysfunction found in specific case
descriptions of myalgic encephalomyelitis (for
example, Ramsay, 1988), or 'ME/CFS' (as defined by
Carruthers et al, 2003), with other neurological
conditions, for just one example, those found in
Multiple Sclerosis (see, for example, Poser 2000).

Therefore, to have included patients with
neurological symptoms and/or signs might have
meant there was a risk of other neurological
conditions (such as Multiple Sclerosis) being involved
in the trial.

Indeed, in his response to me on the biomedcentral
site, Peter White discusses the need to keep people
with other neurological conditions out of the trial.

But, crucially, the key problem here is that, from the
evidence available (some of which is detailed by
Professor Hooper), Professor White and his
colleagues do not appear to believe 'ME' is a
neurological condition in the first place, despite the
acceptance of this by the World Health Organisation
and British agencies, and despite the evidence
available to support this, and therefore seem unable
to acknowledge that at least some people given an
ME or CFS diagnosis have organic neurological and
other deficits.

It seems therefore likely that ME/CFS patients
with signs and symptoms of neurological (and
indeed other organic) dysfunction were actively
excluded from the PACE trial.


Ironically, if this premise is accurate, White et al
cannot have substantiated their claims for the safety
and efficacy of CBT/GET for patients they claim such
treatments are safe and efficacious, those given an
ME or CFS diagnosis who suffer physiological
impairments including neurological deficits.

It needs to be noted that the PACE article actually
claims the results:

"can be generalised to patients who meet alternative
diagnostic criteria for chronic fatigue syndrome and
myalgic encephalomyelitis but only if fatigue is their
main symptom" (citing the London criteria and
Reeves et al 2003 as the 'alternative diagnostic
criteria').

This is a confusing statement, bearing in mind that:
the 'London Criteria' used in PACE were not actually
that as referenced by them (as the documentation
from the PACE trial protocol shows); the Reeves et al
criteria were supposed to have been used by them
within the trial itself (so the question arises, why
are they 'alternative'?); and their conclusions, and
that of Bleijenberg and Knoop and others, presents a
blanket claim of safety and efficacy for all people
given a diagnosis of ME or CFS, contradicting this
statement about "only if fatigue is their main
symptom".


Indeed, it is notable that White et al, from the
beginning of the trial and throughout, refused to use
the criteria of Carruthers et al (2003) to include
people with symptoms (and possibly signs) of
neurological dysfunction, although they used their
own (specifically customised and therefore different)
version of a set of criteria claimed to identify ME (the
'London' criteria), already controversial due to lack of
peer reviewed publication, uncertainty in authorship,
and the existence of different versions.

Indeed, as is evident from the PACE Trial protocol,
the specifically customized PACE version of the
'London' criteria for ME bore close similarities to the
Oxford criteria for CFS, and were fundamentally
different to the Carruthers et al criteria (2003).


That so many patients (nearly a third), of whom had
been referred to a 'specialist chronic fatigue
syndrome unit' by their GP, were actually excluded
from the CFS diagnosis favoured by these authors, is
extremely important, and leads to the question:

what happens to such patients? When the patient
exclusion process of another project (the negative
XMRV study by Erlwein et al, 2009) was clarified by
co-authors (Wessely et al, 2010), some clinical
patients who had attended chronic fatigue/CFS clinics
commented in response that they had not been
investigated thoroughly in the way the research
cohorts appeared to be (ironically in order to exclude
organic disease), either at the clinic or by their GP.

Another study by Newton et al (2010) found that
40% of patients referred to a 'chronic fatigue
syndrome unit' did not have 'CFS', though, crucially,
Newton was including, as 'CFS' patients, those with
specific physiological conditions such as positional
orthostatic tachycardia syndrome (POTS), which are
associated with neurological dysfunction (Carruthers
et al, 2003).
If these patients had been also excluded from a
diagnosis of CFS (which, according to the Oxford
criteria and indeed the Reeves et al criteria, they
should), the amount of patients referred to British
'chronic fatigue syndrome units' (or, often, 'chronic
fatigue units'), meeting the Oxford criteria for CFS
and having no exclusionary conditions that suggest
organic dysfunction, would appear to be very small
indeed.

But even patients excluded under the rubric of the
Oxford criteria from research, will now be exhorted to
'try' CBT and/or GET in a clinical context, because of
the unsafe claims of the PACE trial.


Another major discrepancy in the PACE trial that I
wish to specifically highlight here is that one of the
treatments, 'Adaptive Pacing Therapy', bore no
resemblance to the strategy of 'pacing', specifically
adopted by ME patients and reported as being
helpful by them in charity surveys.

'Pacing' as reported in these surveys is merely an
autonomous flexible management strategy utilised
by patients with ME in order to cope with the
limitations of the illness, like sufferers of other
chronic impairments.

The PACE trial's 'Adaptive Pacing Therapy' was not
autonomous, being therapist led, and imposed a
regime upon the patient similar to the GET
treatment.

This has specific iatrogenic potential in that,
informed by the claims of PACE, patients may be told
by health care professionals that an autonomous,
flexible self-management strategy that is common in
patients with chronic impairments, that has been
found to be useful in ME/CFS, must not be practised,
on the incorrect findings of a trial that did not even
study the correct type of 'pacing' in the first place.



In light of the extremely complex and serious
problems of confounding inherent in this trial, it is of
serious issue that unsafe claims of safety and
efficacy of CBT/GET as treatments for ME or CFS were
made by the PACE authors and supporters, to the
point that iatrogenic harm could be caused to
patients because of a resulting lack of
understanding, by medics and ancillary staff,
misinformed by such unsafe claims, of both the
neurological and other physiological impairments in
at least some patients given such diagnoses, and
the abnormal physiological response to exertion that
appears to be a key feature in those patients.



I also draw your attention to your colleague Zoe
Mullan's comment to me in our email
correspondence:

"We were not aware of any objections to this study".

I am very concerned about this as objections to the
PACE trial have been publicly mounted, and indeed
have been responded to (though in eventuality, not
satisfactorily) by authors of the trial, some years
prior to publication.


At the very least, a much more detailed discussion of
limitations to this study should have been
undertaken that took into account the concerns that
were raised.

In the circumstances and to ensure patient safety, I
now believe that the article should be retracted, and
the claims that CBT and GET have been found to be
safe in ME and/or CFS should be publicly corrected.

I must ask that you keep to your promise that "we
will invite the critics to submit versions of their
criticisms for publication and we will try as best as
we can to conduct a reasonable scientific debate
about this paper" made by you on the ABC radio
programme 'The Health Report'.

I consider myself as one of those 'critics'. Indeed, I
believe a full and public good faith investigation of
my own and others complaints need to be
undertaken by you and other parties, as appropriate.

In addition, I believe there should be an unreserved
public apology issued to all the ME community and
their advocates who have raised legitimate and
substantive concerns, in various ways, about the
problems in the PACE trial, for the prejudicial
misrepresentation of their concerns and motivations,
made by you on the ABC radio programme 'The
Health Report', in which you made the following
comments:


http://www.abc.net.au/rn/healthreport/stories/2011/3192571.htm


"...the criticisms about this study are a mirage, they
obscure the fact that what the investigators did
scrupulously was to look at chronic fatigue syndrome
from an utterly impartial perspective."


"Not this kind of orchestrated response trying to
undermine the credibility of the study from patient
groups but also the credibility of the investigators
and that's what I think is one of the other alarming
aspects of this. This isn't a purely scientific debate;
this is going to the heart of the integrity of the
scientists who conducted this study."


"...indeed in a few examples of allegations have
been made to professional authorities, the General
Medical Council here in the UK about the work of
these scientists on the basis of the flimsiest and
most unfair allegations. And indeed the study costs
$4 million pounds to undertake but the allegations
and the freedom of information requests and the
legal fees that have been wrapped up over the years
because of these vexatious claims has added
another 750,000 pounds of taxpayers' money to the
conduct of this study."


"Indeed, and I think this is where one sees a real
fracture in the patient community. One is seeing a
very substantial number of patients very willing to
engage in this study, desperate to get good
evidence on which to base their future treatment but
one sees a fairly small, but highly organised, very
vocal and very damaging group of individuals who
have I would say actually hijacked this agenda and
distorted the debate so that it actually harms the
overwhelming majority of patients."


"Well what we're doing right now is waiting for the
formal response from the authors to this 43 page
attack on their integrity and the study and the
request for a retraction. We plan to publish their
response to that attack, we will invite the critics to
submit versions of their criticisms for publication and
we will try as best as we can to conduct a
reasonable scientific debate about this paper. This
will be a test I think of this particular section of the
patient community to engage in a proper scientific
discussion."



These prejudicial comments should also be retracted.
They are inappropriate and inaccurate, and sadly
indicate a possible bad faith on your part from the
offset, and this is an unusual and extremely worrying
response from the editor of a key medical journal to
the reasonable concerns that have been raised, in
good faith, by a vulnerable patient community and
others supporting them.

I cannot emphasise enough that the concerns related
by myself and others relate specifically to the risks
to safety of patients, and our concern to prevent
those: this is the motivation for my own actions
here.


In addition, please note that I am, here, formally,
repeating my request, made to Zoe Mullan initially,
that peer review documentation be made accessible
to me under the Freedom of Information Act.

I understand that the usual procedure under this Act
applies. I am concerned that no response has been
given to my original request, made in early March.


Please be aware that, in the interests of
transparency and accountability, I will be publicising
this email, and I may publish the responses I
receive.



Yours sincerely,


Angela Kennedy

Landmark Educational Program on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)

National ME/FM Action Network:

Dr. Daniel Peterson, one of the most experienced physicians in the world in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), will be in Calgary April 29 – May 1, 2011.

Dr. Peterson will talk about the science of ME/CFS both established and cutting edge research with focus on his area of expertise which is the role of viral infections in ME/CFS.


Dr. Peterson has worked with thousands of patients with ME/CFS for over 27 years. He offers hope to those who have lost hope.

He has contributed to the major definitions of the condition including the Canadian Consensus Guidelines.

He is a co-author of the exciting finding of a new human gamma retrovirus in patients with ME/CFS and in the blood supply.

http://www.bloodservices.ca/centreapps/internet/uw_v502_mainengine.nsf/page/Indefinite%20Deferral#06

He is a founding member of the International ME Research Collaboration.

more information

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