Saturday, January 30, 2010

Professor Wessely: She died from “acute renal failure as a result of chronic fatigue syndrome

Criona Wilson with a picture of Sophia, who died of ME aged 32
Steve Bird, The Times
January 30, 2010


As Criona Wilson knelt beside her dying daughter’s bedside, she promised her that her death would not be in vain. Before the frail body of 32-year-old Sophia finally succumbed to the medical complications and ravages of ME, she replied in a whisper: “Then it’s all worth it.”

In the years that followed, Mrs Wilson, 66, a former midwife, dedicated her life to proving that her daughter’s condition was not a figment of imagination, nor one that merited her youngest child’s incarceration in a mental hospital.

Her battle saw her take on the medical profession and accepted thinking about the diagnosis and treatment of ME, also known as chronic fatigue syndrome. Eventually, in 2006, a coroner ruled that Sophia’s death was the result of myalgic encephalomyelitis — the first such ruling at an English inquest.

<...>

Her daughter, Sophia Mirza, was a talented and popular arts graduate living with her mother in Brighton in 1999 when she contracted ME at the age of 25. She became confined to her bedroom and, just as Miss Gilderdale had, needed round-the-clock care.

In 2003 she was visited by a psychiatrist, even though Miss Mirza complained only of physical discomfort. The psychiatrist told her that she was making up her symptoms and if she continued to pretend to be ill he would section her under the Mental Health Act. Mrs Wilson said: “I knew my daughter. There was no way she was mentally ill or pretending.”

When the dread knock on her door finally came in 2003, there was little she could do. A policeman forced the door open and the psychiatrist and a social worker locked themselves into Miss Mirza’s room to prepare her for her trip to a psychiatric ward.

Her condition took a dramatic turn for the worse. After 13 days she was released and taken back to the care of her mother. “That spell in a mental hospital set her back terribly. We lost all faith in medical professionals. We were alone,” said Mrs Wilson.

In 2005 Miss Mirza could barely muster the energy to speak, eat or drink. She and her mother had already agreed that no doctors should be called in case she would be sectioned again. On November 25, 2005, Miss Mirza died in her bed at home.

<...>

At the inquest the next year a neuropathologist told the court that Miss Mirza’s spinal cord was inflamed and three quarters of her sensory cells had abnormalities.

It was, the court heard, a clear physical manifestation of ME
.

The coroner ruled that she had died from “acute renal failures as a result of chronic fatigue syndrome”.

Thursday, January 28, 2010

Kay Gilderdale: the beginning of the rest of her life

By Neil Tweedie
The Telegraph


Kay Gilderdale is beginning the rest of her life. For the first time in 18 years she has experienced something like relief, the shadow cast by her daughter’s tormented life, and the traumatic manner of its end, lifted at last.

It could have been so different. Mrs Gilderdale, 55, might have been beginning a sentence for attempted murder on Monday, the latest example of Britain’s confused policy on assisted suicide. Last week, Frances Inglis was jailed for nine years for administering a lethal dose of heroin to her brain-damaged son in a not-wholly-dissimilar example of mercy killing. Yet, a few days later, Mrs Gilderdale walked free from Lewes Crown Court, despite admitting that she had helped her daughter, Lynn, to die.

What saved her was a jury, which accepted that she had acted in what she imagined to be the best interests of her daughter. Acquitted of attempted murder, Mrs Gilderdale was given a conditional discharge for the offence of assisting a suicide. The judge queried the decision of the Crown Prosecution Service to proceed with the more serious charge, and there the issue of assisted suicide rests for the time being, in a haze of doubt and inconsistency.

Lynn Gilderdale was 31 when she tried to kill herself in December 2008. It was her second attempt, her first being in 2007, when she took an overdose of morphine.
For 17 years she had endured a twilight life, confined to bed at home, shielded by curtains from the natural light she was unable to bear. Lynn suffered from chronic fatigue syndrome, better known as ME, a condition greeted with scepticism in some quarters for the absence of a clear physiological cause, but which produced the most disastrous symptoms in her.

Unable to move or speak, fed through a tube inserted into her nose, and sustained by a cocktail of drugs, she eventually decided enough was enough.

Tuesday, January 26, 2010

Lynn Gilderdale’s moving account of why she decided to end her life

From The Times
January 26, 2010


OK guys, I have something really important to say. I want to talk about something extremely private and personal to share with you, my closest friends. After many years of serious deliberation, I have pretty much come to a huge decision. I hope you will try to understand my reasons for this decision and even if you don’t personally agree with it I hope you won’t judge me too harshly.

I don’t know how to begin. I am just going to come out with it. Here goes, deep breaths. Basically I think some of you have known for a while I have had enough of this miserable excuse for a life, of merely semi-existing for the last 16½ years. I have had enough and I want to die. This is no whim and certainly not just because of the reactive depression diagnosed a few months ago. I am no longer on antidepressants because they weren’t doing anything for me.

I really, really, really want to die and have had enough of being so sick and in so much pain every second of everyday and, basically, one serious health crisis after another. I am tired, so very, very tired and I just don’t think I can keep hanging on for that elusive illness-free existence.

Monday, January 25, 2010

Mother Kay Gilderdale cleared of trying to murder bedridden daughter

By Tom Pugh, Press Association
Monday, 25 January 2010


A mother was found not guilty today of attempting to murder her bed-ridden daughter by giving her morphine and a cocktail of drugs

Bridget Kathleen Gilderdale, known as Kay, had already admitted aiding and abetting the suicide of 31-year-old Lynn Gilderdale at the family bungalow.

She was given a 12-month conditional discharge for assisting the suicide.

The jury returned its verdict after deliberating for less than two hours.

Cries were heard from the public gallery as the not guilty verdict was read by the foreman.

Mr Justice Bean said: "I do not normally comment on the verdicts of juries but in this case their decision, if I may say so, shows that common sense, decency and humanity which makes jury trials so important in a case of this kind.

"There is no dispute that you were a caring and loving mother and that you considered that you were acting in the best interests of your daughter."

The judge added that she acted selflessly and with exemplary devotion for 17 years.

Jurors heard she crushed up pills and fed them through her daughter's nasal tube, handed her morphine and injected three syringes of air into her vein after she made a failed suicide bid.

Gilderdale, 55, initially tried to stop her daughter ending her life following a 17-year battle with the chronic fatigue illness ME but backed down after she said: "I want the pain to go."

Lewes Crown Court was told she was a loving and devoted mother to her daughter, who was struck down by ME at the age of 14 and needed round-the-clock care at her home in Stonegate, near Heathfield, East Sussex.

Miss Gilderdale, a once active, sporty and musical girl, led an "unimaginably wretched" life in her later years.

She was paralysed from the waist down, unable to speak, eat or drink and was fed through a tube.

Communication to her parents, who were divorced but remained supportive of her, was through a form of sign language they devised themselves.

She was bed-bound, socially isolated, unable to sit up and developed suicidal thoughts, which she published on an online forum for people suffering from illnesses.

She had attempted suicide in the past, had drafted a "living will", placed a Do Not Resuscitate note on her medical records and considered ending her life at Dignitas, the Swiss-based assisted suicide clinic.

In the early hours of December 3 2008, she took an overdose of morphine by injecting the pain-relieving medicine directly into her vein, according to Gilderdale's own account to the family GP, Dr Jane Woodgate, on the morning of the death.

When she realised that the dosage was not high enough, Miss Gilderdale called out to her mother, who then spent around an hour trying to persuade her not to press ahead with killing herself.

But after telling her mother that she wanted the "pain to go" and that she did not want to go on, she set about, over the course of 30 hours, helping her end her life, the trial heard.

Gilderdale handed her two syringes of morphine, consisting of 210mg each, which her daughter administered herself through her Hickman line directly into her vein.

Hours later, at about 6am, Gilderdale felt that the morphine had not achieved her daughter's aim of killing herself and searched the house for tablets, fearing that she would be brain-damaged.

These pills were crushed using a pestle and mortar and then inserted into her daughter's nasogastric tube.

Evidence from Sussex Police found that during the period until her death, Gilderdale trawled the internet for details on drug overdoses and euthanasia.

Following "two or three" more doses of morphine, three syringes of air were pumped into her Hickman line with the intention of causing air embolisms, it was alleged.

Miss Gilderdale died at 7.10am on December 4, with only her mother present. A post-mortem examination at the Conquest Hospital in Hastings found the cause of death was morphine toxicity.

Gilderdale's ex-husband, Richard Gilderdale, told the court he discovered his daughter had died after he received a text message from his former wife, saying: "Please can you come now. Be careful. Don't rush."

When he received the message, he knew what had happened, he told the court.

He said he could never imagine his ex-wife trying to kill their daughter, saying she gave up work without regret and rarely took a holiday.

Describing Gilderdale's reaction to the death, he said: "Her world had come to an end, she was crestfallen, heartbroken - everything you could describe about somebody who had been to hell and back."

Miss Gilderdale had attempted to kill herself before in mid-2007 with a morphine overdose, but her father walked into her bedroom to find her sleepy.

Retired Sussex Police officer Mr Gilderdale said Gilderdale, whom he divorced in around 2001, remained positive that she would get better, although he privately thought otherwise.

Despite their marriage split, they remained actively supportive of their daughter.

Throughout the trial, Gilderdale was supported by a large number of family and friends, including her son Steve and her former husband.

She declined to give evidence. Jurors were told that she could not be tried for murder as it was uncertain whether her daughter died from the overdose she gave herself or from that given by her mother.

Standing on the steps of the court, Gilderdale's son, Steve, read a statement praising the verdict.

Flanked by his mother and father, he said: "We believe this not guilty verdict properly reflects the selfless actions my mother took on finding that Lynn had decided to take her own life, to make her daughter's final moments as peaceful and painless as possible.

"These actions exhibit the same qualities of dedication, love and care that mum demonstrated throughout the 17 years of Lynn's illness.

"I'm very proud of her and I hope she will be afforded the peace that she deserves to rebuild her life and finally grieve for the death of her daughter."

The case has drawn parallels with that of Frances Inglis, the mother jailed at the Old Bailey last week for injecting her brain-damaged son with a lethal dose of heroin, and reignited the debate about assisted suicide.

Mr Justice Bean asked prosecutor Sally Howes QC to explain "why it was considered to be in the public interest" to pursue Gilderdale on the attempted murder charge when she had already admitted aiding and abetting her daughter's suicide.

Ms Howes said the prosecution decided at "the highest level" to press on with a jury trial after Gilderdale had told her GP and the police that she had administered an air embolism with the intent to end her daughter's life.

"There was no submission of no case to answer and the matter went to the jury," Ms Howes said.

Defence counsel John Price QC asked the judge to consider an absolute discharge based on interim guidelines by the Director of Public Prosecutions, Keir Starmer QC, who last year outlined 16 "public interest factors" in favour of a prosecution and 13 factors against taking legal action to bring clarity to existing assisted suicide legislation.

The move came after law lords backed multiple sclerosis sufferer Debbie Purdy's call for a policy statement on whether people who help someone commit suicide should be prosecuted.

Mr Price said that if the DPP was handling the case today, in light of the verdict, it would not be considered in the public interest to prosecute.

Dr. Anne McIntyre Interviews Ean Proctor, the boy Wessely had sectioned

ShowalterdontlikeME:

The events happened 1988. The Channel 4 program was "Frontline" 25 Jul 1993
For details of Wessely's role google "To set the record straight about Ean Proctor from the Isle of Man."

DR. Peter Hudgson was 57 at the time of the film. He died 17 Feb 2005.
The girl near the end of the film holding a hamster is Lynn Gilderdale. She never recovered and sadly died last year (2009). Her mother's nightmare still continues, and has to face a court case this year. I'm sure all send her their best wishes.

Friday, January 22, 2010

Nursing Times online poll: Is the Daily Mail bad for your health?

Saturday, 16 January 2010 08:25

Following the Daily Mail apology over their online vote about whether ME is a genuine illness, the Nursing Times website has launched its own poll on whether the Daily Mail is bad for people's health.
Their Beyond the Bedpan columnist writes:


If you need health advice, Beyond the Bedpan recommends the Daily Mail. Provided, of course, that you’re not making it up.

The Daily Mail takes pride in its health coverage, and rightly so. Just ask the thousands of children saved from autism when the paper championed an aleged link between the neural disorder and the MMR vaccine.

And I do mean championed. The MMR-autism link went on to be categorically discredited. But The Mail battled on, brushing aside the petty protests of scientific evidence to bring it’s own lucrative version of “truth” to the masses.

Even a claim by the Media Standards Trust - that the anti-MMR claims were increasing the chances of a measles epidemic and putting children's lives at risk - failed to dampen The Mail’s righteous fire.

More recently, the paper questioned the safety of the human papillomavirus virus (HPV) jab when a 14-year-old girl died shortly after being vaccinated. And the paper continued to question it even after public health officials said the girl’s death had been caused by "serious underlying health conditions", and not by the HPV vaccine.

So it should be no surprise to learn that that the Mail’s sympathies extend to people suffering from myalgic encephalopathy (ME). The condition causes chronic fatigue, muscle and joint pain, sleep disorders, gastric disturbances and poor memory. The symptoms are often debilitating enough to prevent sufferers from working, going to school or generally leading normal lives.

And what words of advice would our favourite health correspondents have for people suffering this debilitating symptoms? It was summed up nicely in a reader poll: “Is ME a genuine illness?”

In other words, “not only do we know nothing about your condition, but we think you might have made the whole thing up”.

Shocking stuff. So shocking, that even the immovable Mail saw fit to remove the poll and apologise. An apology that neatly blamed the fiasco on an unnamed “junior” member of staff, and couldn’t resist raising a suggestive eyebrow by reminding offended ME sufferers that “there is still a great deal to learn about what lies behind the condition”. Charming.

Poll
Is the Daily Mail bad for your health?


Yes
No
Don't be silly
I'm vaccinated
It doesn't exist

Wednesday, January 20, 2010

Kay Trial on BBC TV South East, tonight (19 January 2010)

Hope this works for you.

Click here http://www.bbc.co.uk/southeasttoday/

Click on orange text "Latest Programme" to open BBC Media Player

Click Launch this in stand alone player

Starts about counter 12.45

(slide blue bar, bottom left to just before this count to get a good start)

John
drjohngreensmith@mefreeforall.org
Dr John H Greensmith
ME Free For All. org

Saturday, January 16, 2010

Disgraceful Psychiatrists

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"

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?

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.

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

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.

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 ...

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.

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)