this excellent letter, or an edited version of it, was published in yesterday's Daily Mail:
"Is M.E. a genuine illness? poll in "British experts say ME virus is a myth", Daily Mail, 6 January 2010 #5
As an M.E. sufferer of over three years, I wish to protest most strongly at your promotion of a poll questioning the legitimacy of my illness (Is M.E. real?).
www.dailymail.co.uk/debate/polls/poll.html
M.E. has been listed as a neurological disease by the World Health Organisation since 1969 and, as my diagnosis came from my GP, one would assume she knew what she was talking about and would not diagnose anybody with something that did not exist.
A year ago I lost my disability benefits solely because of the bias and misinformation held as `truths' by some doctors who work for the DWP - this was despite having physical tests results showing massive cell damage going on inside my body and providing irrefutable evidence of the physiological nature of my disease which is responsible for the overwhelming pain and fatigue from which I suffer.
An entire industry has been built up on the basis of denying the reality of M.E. as a disease, all based around vested interests of the insurance industry and certain psychologists who are in the pay of that industry and the DWP.
The recent discovery of the retrovirus XMRV in the blood of sufferers is about to bring their house of cards toppling down, hence their hastily bodged pseudo-replication of the WPI (Whittemore Peterson Institue) study which discovered the link with XMRV.
I think you will find the study put forth by the Behavioural unit of King's has not replicated the stringent protocols of the WPI's study, and therefore any conclusions forthcoming from their `research' are absolutely worthless, being totally incomparable to the original findings of the WPI.
That they were rushed through, and rushed to publish, is evidence of the panic taking hold amongst those who have built lucrative careers out of condemning extremely sick people as `malingerers' and the unworthy sick; the end of this disgraceful situation is nigh. No longer will the government be able to justify spending a big fat zero on biomedical research into my illness, leaving it to charities and individuals like myself to fund research into finding a cure.
UK psychologists can paddle as fast as they may, they cannot resist the turning tide of science, which will sweep them and their invalid ideas out into the sea of the outdated and unempirical. Don't give these ideas any credence with your ill-conceived poll.
Yours sincerely
Jenny Wilson
Swansea"
Doctor Speedy and ME in search of medical honesty
Saturday, January 16, 2010
Wednesday, January 13, 2010
ME - Can shorten lifespan by 25 years
Annette Whittemore speaks about a small study of desceased CFS patients showing everyday causes such as heart disease and cancer but the 100 patiients in this study died on average 25 years younger than normal.
Why exclude those too ill to be "regulars" at Professor Wessely's clinic
Stephen Ralph posted this on Co-cure:
"The dogma of the last 20 years has been created by the system that has had control of "CFS/ME".
If Professor Wessely and his colleagues had no fear of finding XMRV in patients with a diagnosis of Chronic Fatigue Syndrome then they would not be frightened of using a selection criteria not used previously ie. the Canadian Consensus Criteria.
If Lombardi et al were able to effectively utilise the Canadian Criteria as they were then why were those at Imperial not allowed to use patients selected the same way?
Surely if one wants to replicate a groundbreaking study with the best possible source material then one would want to do things in accordance with Lombardi?
The only reason I can see for the failure to replicate the Lombardi patient selection protocol is that those behind the patients selected for the Imperial study were actually afraid of the outcome had they used the same methods for selecting patients.
<...>
Wessely, Cleare and Collier claim that their patients were not mental health patients yet time and again Wessely, Cleare, White, Sharpe et al discuss their patients in terms of mental health perpetuation and treat their patients with CBT and Graded Exercise.
Two examples of exactly how the "Wessely School" demonstrate their beliefs surrounding mental health and Chronic Fatigue Syndrome are given in my previous e-mail that includes the PLOS One comments.
Why exactly were the same old patients chosen for this study?
Why were no severely affected patients chosen who have never had the luxury
of attending a clinic run by Professor Wessely or one of his colleagues?
The 25% ME Group have a membership list of prime candidates all severely affected patients with G93.3 Myalgic Encephalomyelitis who are too ill to take part in CBT and Graded Exercise.
Why exclude those too ill to be "regulars" at Professor Wessely's clinic and why use patients already "screened" by Professor Wessely and his colleagues.
As there are potential conflicts of interest with the involvement of ANY psychiatrists such as Cleare, Wessely, White, Sharpe et al, why accept a study that has any involvement of any of the usual collaborators?
"The dogma of the last 20 years has been created by the system that has had control of "CFS/ME".
If Professor Wessely and his colleagues had no fear of finding XMRV in patients with a diagnosis of Chronic Fatigue Syndrome then they would not be frightened of using a selection criteria not used previously ie. the Canadian Consensus Criteria.
If Lombardi et al were able to effectively utilise the Canadian Criteria as they were then why were those at Imperial not allowed to use patients selected the same way?
Surely if one wants to replicate a groundbreaking study with the best possible source material then one would want to do things in accordance with Lombardi?
The only reason I can see for the failure to replicate the Lombardi patient selection protocol is that those behind the patients selected for the Imperial study were actually afraid of the outcome had they used the same methods for selecting patients.
<...>
Wessely, Cleare and Collier claim that their patients were not mental health patients yet time and again Wessely, Cleare, White, Sharpe et al discuss their patients in terms of mental health perpetuation and treat their patients with CBT and Graded Exercise.
Two examples of exactly how the "Wessely School" demonstrate their beliefs surrounding mental health and Chronic Fatigue Syndrome are given in my previous e-mail that includes the PLOS One comments.
Why exactly were the same old patients chosen for this study?
Why were no severely affected patients chosen who have never had the luxury
of attending a clinic run by Professor Wessely or one of his colleagues?
The 25% ME Group have a membership list of prime candidates all severely affected patients with G93.3 Myalgic Encephalomyelitis who are too ill to take part in CBT and Graded Exercise.
Why exclude those too ill to be "regulars" at Professor Wessely's clinic and why use patients already "screened" by Professor Wessely and his colleagues.
As there are potential conflicts of interest with the involvement of ANY psychiatrists such as Cleare, Wessely, White, Sharpe et al, why accept a study that has any involvement of any of the usual collaborators?
Tuesday, January 12, 2010
Breakthrough made in diagnosing chronic fatigue syndrome
The Yomiuri Shimbun
Researchers have discovered a protein in blood that can be used to diagnose chronic fatigue syndrome, a breakthrough that could help detect the ailment during physical checkups.
There are diagnostic criteria for chronic fatigue syndrome--a disorder involving extreme fatigue of unknown cause that continues for at least six months--that rely primarily on subjective symptoms, but there have been no objective markers such as blood tests.
The research team led by Hiroshi Kiyama, a professor of anatomy at Osaka City University, examined the intermediate lobes of the pituitary glands of rats in which they induced extreme fatigue by making them exercise for five consecutive days. They found that the lobes excreted extraordinarily high amounts of a protein called alpha-MSH and that alpha-MSH levels in the animals' blood also increased.
The neurotransmitter dopamine inhibits the secretion of alpha-MSH, but the rats' ability to produce dopamine declined as their fatigue grew.
The group also tested the levels of alpha-MSH in the blood of 57 people diagnosed with chronic fatigue syndrome and the blood of 30 healthy people.
The average level among the 37 people who had been diagnosed with chronic fatigue syndrome less than five years before was about 50 percent higher than the healthy people.
Researchers have discovered a protein in blood that can be used to diagnose chronic fatigue syndrome, a breakthrough that could help detect the ailment during physical checkups.
There are diagnostic criteria for chronic fatigue syndrome--a disorder involving extreme fatigue of unknown cause that continues for at least six months--that rely primarily on subjective symptoms, but there have been no objective markers such as blood tests.
The research team led by Hiroshi Kiyama, a professor of anatomy at Osaka City University, examined the intermediate lobes of the pituitary glands of rats in which they induced extreme fatigue by making them exercise for five consecutive days. They found that the lobes excreted extraordinarily high amounts of a protein called alpha-MSH and that alpha-MSH levels in the animals' blood also increased.
The neurotransmitter dopamine inhibits the secretion of alpha-MSH, but the rats' ability to produce dopamine declined as their fatigue grew.
The group also tested the levels of alpha-MSH in the blood of 57 people diagnosed with chronic fatigue syndrome and the blood of 30 healthy people.
The average level among the 37 people who had been diagnosed with chronic fatigue syndrome less than five years before was about 50 percent higher than the healthy people.
Monday, January 11, 2010
Result!
Just tried to get on to the silly Daily Mail CBT Poll and it's no longer available.
http://www.dailymail.co.uk/debate/polls/poll.html?pollId=1015226
Sorry professor Wessely and all the other inappropriate illness believers ...
Saturday, January 9, 2010
Simon Wessely's statement regarding the UK's bogus replication study
the Daily Mail is now running an online poll asking whether M.E. is a genuine illness:
http://www.dailymail.co.uk/debate/polls/poll.html?pollId=1015226
there is now a facebook group protesting about this outrageously offensive poll:
http://www.facebook.com/group.php?gid=251249508448
M.E. Free for All has copies of several letters that have been sent to the editor:
http://www.mefreeforall.org/January-2010.2421.0.html#c9051
http://www.dailymail.co.uk/debate/polls/poll.html?pollId=1015226
there is now a facebook group protesting about this outrageously offensive poll:
http://www.facebook.com/group.php?gid=251249508448
M.E. Free for All has copies of several letters that have been sent to the editor:
http://www.mefreeforall.org/January-2010.2421.0.html#c9051
Simon Wessely: Pay Attention GIGO ...
Pay Attention To The Data Set
Thu Jan 07 04:52:29 GMT 2010
by Mary M. Schweitzer, Ph. D.
There is an old saying in computerized statistics:
GIGO. It means garbage in-garbage out - the study is only as good as the data set.
In this case, the data set came from patients diagnosed with a version of CFS that is entirely
psychiatric.
Simon Wessely, one of the co-authors, has stated numerous times that he believes the disease to be a type of neurosis once called "neurasthenia" ("the vapors," a "nervous condition," a "nervous breakdown").
Two more of the seven authors on this study work with Wessely at Kings College, London.
Wessely once told a patient with neurally mediated hypotension (suggested as a cause or contributing factor in JAMA, fall 1995) that she could not possibly have CFS because all patients with physically explainable symptoms would have been weeded out
before they reached his clinic for diagnosis.
Makes for a tautology, then, if there are no physical abnormalities in his patients.
Kings College, London, follows the theory that
patients with CFS hold "inappropriate illness beliefs,"
and they have to re-learn that (1) they are well,
through cognitive behaviour therapy (CBT), and (2)
they can be reconditioned, through graded exercise
therapy (GET) - and then they can happily go back to
work and family.
These theories have sent children and even adults to
foster care or psychiatric hospitals for the sin of
having "chronic fatigue syndrome."
The Kings College picture of CFS can be viewed on
their website, at:
http://www.kcl.ac.uk/projects/cfs/health/
If you are pressed for time, read the section called
"Letting go of support," at:
http://www.kcl.ac.uk/projects/cfs/health/#Support
The fact of the matter is that patients so
diagnosed do not have the disease that was
studied at the Whittemore-Peterson Institute.
Most likely, they have a form of depression.
A great deal of useful resarch into biomedical
markers and viruses has been conducted using the
Fukuda definition for CFS (CDC, 1994).
Wessely, White, Sharpe, Cleare, Chalder, et al,
however, origionally rejected the Fukuda definition,
substituting instead a definition that did not include
any physical symptoms but allowed depression.
The result, not unsurprisingly, is that most of their
patients suffer from some form of depression.
(Ironically, the jury is still out on whether CBT/GET
even helps the depressed patients.)
In this article, however, the researchers claimed to
have used the U.S. CDC Fukuda definition. The
definition requires six months of debilitating fatigue
plus four our of eight possible physical symptoms.
If the correct symptoms are chosen, particularly
if interpreted more generally, it is possible to
make depressed patients look like they fit the
Fukuda definition.
Note what happens if you use the following:
- Six months of fatigue
- Headaches
- Sleep abnormalities
- General aches and pains
- Distraction or confusion
Who needs a retrovirus when "CFS" can be so easily
"cured"? According to Kings College, "Our routine
treatment is cognitive behaviour therapy ... Some
individuals receive CBT over the telephone if they
live a long way from the unit or find travelling
difficult."
The patients who have tested positive for XMRV in
the Mikovits et al studies have very different medical
histories.
Most have other diagnosed medical conditions -
including, but not limited to, Coxsackie B, Adenovirus
4, HHV-6 (Variant A), recurring EBV, HHV-7,
cytomegalovirus, chlamydia pneumonae,
mycoplasma.
Many of them have a nonexistent natural killer cell
function, a viral antibody truncated in half (the
37kDa Rnase-L), and/or inverted T-cell ratios. Some
who have been sick for decades have developed
myocarditis, stem cell cancer, Burkett's lymphoma -
and of these, too many have already died.
What on earth do the King's College clinic's
patients have in common with those of Dan
Peterson at Incline Village, NV?
Only the name "chronic fatigue syndrome."
There is no shared meaning.
For a true evaluation of the XMRV research, it's
necessary not only to follow the process precisely,
but also to use a comparable data set. This data set
has absolutely nothing in common with the one used
by the WPI, NCI, and Cleveland.
And that is what is meant by the old saying, GIGO.
Reviewers of research for publication must pay more
attention to the data sets being used. The results
mean nothing if you are comparing apples to
oranges.
It is also well past time that political entities
charged with the health and well-being of the public
ALSO pay attention to the way research has been
constructed, not just the abstract or the final
paragraph.
Without consistency, there is no science. Only
opinions.
Mary M. Schweitzer, Ph.D.
Thu Jan 07 04:52:29 GMT 2010
by Mary M. Schweitzer, Ph. D.
There is an old saying in computerized statistics:
GIGO. It means garbage in-garbage out - the study is only as good as the data set.
In this case, the data set came from patients diagnosed with a version of CFS that is entirely
psychiatric.
Simon Wessely, one of the co-authors, has stated numerous times that he believes the disease to be a type of neurosis once called "neurasthenia" ("the vapors," a "nervous condition," a "nervous breakdown").
Two more of the seven authors on this study work with Wessely at Kings College, London.
Wessely once told a patient with neurally mediated hypotension (suggested as a cause or contributing factor in JAMA, fall 1995) that she could not possibly have CFS because all patients with physically explainable symptoms would have been weeded out
before they reached his clinic for diagnosis.
Makes for a tautology, then, if there are no physical abnormalities in his patients.
Kings College, London, follows the theory that
patients with CFS hold "inappropriate illness beliefs,"
and they have to re-learn that (1) they are well,
through cognitive behaviour therapy (CBT), and (2)
they can be reconditioned, through graded exercise
therapy (GET) - and then they can happily go back to
work and family.
These theories have sent children and even adults to
foster care or psychiatric hospitals for the sin of
having "chronic fatigue syndrome."
The Kings College picture of CFS can be viewed on
their website, at:
http://www.kcl.ac.uk/projects/cfs/health/
If you are pressed for time, read the section called
"Letting go of support," at:
http://www.kcl.ac.uk/projects/cfs/health/#Support
The fact of the matter is that patients so
diagnosed do not have the disease that was
studied at the Whittemore-Peterson Institute.
Most likely, they have a form of depression.
A great deal of useful resarch into biomedical
markers and viruses has been conducted using the
Fukuda definition for CFS (CDC, 1994).
Wessely, White, Sharpe, Cleare, Chalder, et al,
however, origionally rejected the Fukuda definition,
substituting instead a definition that did not include
any physical symptoms but allowed depression.
The result, not unsurprisingly, is that most of their
patients suffer from some form of depression.
(Ironically, the jury is still out on whether CBT/GET
even helps the depressed patients.)
In this article, however, the researchers claimed to
have used the U.S. CDC Fukuda definition. The
definition requires six months of debilitating fatigue
plus four our of eight possible physical symptoms.
If the correct symptoms are chosen, particularly
if interpreted more generally, it is possible to
make depressed patients look like they fit the
Fukuda definition.
Note what happens if you use the following:
- Six months of fatigue
- Headaches
- Sleep abnormalities
- General aches and pains
- Distraction or confusion
Who needs a retrovirus when "CFS" can be so easily
"cured"? According to Kings College, "Our routine
treatment is cognitive behaviour therapy ... Some
individuals receive CBT over the telephone if they
live a long way from the unit or find travelling
difficult."
The patients who have tested positive for XMRV in
the Mikovits et al studies have very different medical
histories.
Most have other diagnosed medical conditions -
including, but not limited to, Coxsackie B, Adenovirus
4, HHV-6 (Variant A), recurring EBV, HHV-7,
cytomegalovirus, chlamydia pneumonae,
mycoplasma.
Many of them have a nonexistent natural killer cell
function, a viral antibody truncated in half (the
37kDa Rnase-L), and/or inverted T-cell ratios. Some
who have been sick for decades have developed
myocarditis, stem cell cancer, Burkett's lymphoma -
and of these, too many have already died.
What on earth do the King's College clinic's
patients have in common with those of Dan
Peterson at Incline Village, NV?
Only the name "chronic fatigue syndrome."
There is no shared meaning.
For a true evaluation of the XMRV research, it's
necessary not only to follow the process precisely,
but also to use a comparable data set. This data set
has absolutely nothing in common with the one used
by the WPI, NCI, and Cleveland.
And that is what is meant by the old saying, GIGO.
Reviewers of research for publication must pay more
attention to the data sets being used. The results
mean nothing if you are comparing apples to
oranges.
It is also well past time that political entities
charged with the health and well-being of the public
ALSO pay attention to the way research has been
constructed, not just the abstract or the final
paragraph.
Without consistency, there is no science. Only
opinions.
Mary M. Schweitzer, Ph.D.
Friday, January 8, 2010
Thursday, January 7, 2010
I tried to save my girlfriend from terrorists - and ended up crippled - now she's my saviour every day
By Tessa Cunningham:
Will Pike and girlfriend Kelly Doyle were dressing for dinner at the famous Taj Hotel in Mumbai in November 2008 when terrorists stormed the building.
Will, 30 and Kelly, 33, hid in their room as the Pakistan-trained gunmen set about slaughtering guests and staff - in all 172 people died.
Fearing for their lives, the couple, both freelance film-makers from London, decided to flee - with devastating consequences.
WILL SAYS: I hit the big 30 on December 30th. It's a milestone. And as friends gathered around to toast me, there were so many reasons to feel happy.
I've got a fantastic girlfriend I'll be with for ever, wonderful friends, a terrific family and a great career.
But, while I'm determined to make the most of my 30s, my life is totally different to what I expected. And some days it's hard not to feel angry and bitter.
There are mornings when I look in the mirror and see myself grappling with all the rituals that used to be so simple and the shock hits me anew. How did I end up like this - paralysed from the waist down, unable to do all the things I once took for granted like getting into the shower?
Confined to a wheelchair, I will never walk again. I can never even enjoy a full sex life nor father children normally.
My life wasn't supposed to be like this. But suddenly everything went into freefall.
It was November 2008 and we had decided to take a break in Goa. After two fantastic weeks there, we made the fateful decision to spend our last day in Mumbai.
And so, early in the afternoon of Wednesday November 26, we booked into the Taj Hotel. A magnificent Edwardian throwback to the colonial era, it's one of the world's most famous hotels.
After a spot of sightseeing in Mumbai, we were back in our room changing for dinner when I heard the first gunshot. I'd only ever heard shots on TV but I knew instantly this wasn't a car backfiring.
I rushed to the window and saw a guy ducking behind a car as a second and then a third shot rang out. Something terrible was happening but I didn't know what - or how much danger we were in.
In fact, terrorists were already in the hotel shooting staff and guests at random while ...
Wednesday, January 6, 2010
Tuesday, January 5, 2010
Monday, January 4, 2010
Risk factors for severe ME/CFS
Pheby D and Saffron L. Biology and Medicine (2009); 1 (4): 50 - 74
This very comprehensive questionnaire based research study was carried out by Dr Derek Pheby and colleagues at the Unit of Applied Epidemiology, University of the West of England.
The research was funded by The ME Association's Ramsay Research Fund.
A key conclusion to the study is that the standard of early management appears to be the most important determinant of severity.
Having a mother with ME was an additional risk factor – a finding that is consistent with an illness causing mitochondrial dysfunction.
Of particular importance is the fact that no evidence was found to indicate that conscientiousness, neurotic traits or personality traits are risk factors in the development of severe ME.
This very comprehensive questionnaire based research study was carried out by Dr Derek Pheby and colleagues at the Unit of Applied Epidemiology, University of the West of England.
The research was funded by The ME Association's Ramsay Research Fund.
A key conclusion to the study is that the standard of early management appears to be the most important determinant of severity.
Having a mother with ME was an additional risk factor – a finding that is consistent with an illness causing mitochondrial dysfunction.
Of particular importance is the fact that no evidence was found to indicate that conscientiousness, neurotic traits or personality traits are risk factors in the development of severe ME.
Sunday, January 3, 2010
Magical Medicine
Magical Medicine: How to make a disease disappear.
Professor Malcolm Hooper and Margaret Williams
Spring 2010
Documents already published that form part of the larger PACE Response document:-
<...>
and now this latest one:
7. Documented involvement of viruses in ME/CFS (30th December 2009)
Professor Malcolm Hooper and Margaret Williams
Spring 2010
Documents already published that form part of the larger PACE Response document:-
<...>
and now this latest one:
7. Documented involvement of viruses in ME/CFS (30th December 2009)
Saturday, January 2, 2010
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