Status of reported 'activist' list re Sunday Times Magazine 05/05/13

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Dear Metropolitan Police Service (MPS),

Could you please:

1) confirm to me the existence of the list referred to by Michael Hanlon in his Sunday Times Magazine article (https://www.thetimes.co.uk/article/this-... dated 05/05/13, relevant text at the bottom of this FoI request)

and

2) on the basis of a positive confirmation, release the list as I believe this is in the public interest.

Relevant text:

“There is, I am told, a specialised unit at the Metropolitan Police dedicated to monitoring the threat, but no one at Scotland Yard will speak publicly about this…..

….I understand that a list is often drawn up in these circumstances - to protect those who might be under threat from potentially dangerous activists of any hue, not just those who are objecting to scientists undertaking research into ME…..

…..After much persuasion, I am shown a list of activists; names that crop up time and again on the ME forums.

They are divided into three categories: militant, radical and active.”

Yours faithfully,

G. Ryan

Metropolitan Police Service (MPS)

Dear G Ryan

Freedom of Information Request Reference No: 2018040000290

I write in connection with your request for information which was received
by the Metropolitan Police Service (MPS) on 05/04/2018.  I note you seek
access to the following information:
   

        Status of reported 'activist' list re Sunday Times Magazine
05/05/13

* Dear Metropolitan Police Service (MPS), Could you please: 1) confirm
to me the existence of the list referred to by Michael Hanlon in his
Sunday Times Magazine article
(https://scanmail.trustwave.com/?c=7089&a...
dated 05/05/13, relevant text at the bottom of this FoI request) and
2) on the basis of a positive confirmation, release the list as I
believe this is in the public interest. Relevant text: “There is, I am
told, a specialised unit at the Metropolitan Police dedicated to
monitoring the threat, but no one at Scotland Yard will speak publicly
about this….. ….I understand that a list is often drawn up in these
circumstances - to protect those who might be under threat from
potentially dangerous activists of any hue, not just those who are
objecting to scientists undertaking research into ME….. …..After much
persuasion, I am shown a list of activists; names that crop up time
and again on the ME forums. They are divided into three categories:
militant, radical and active.”

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Metropolitan Police Service (MPS)

Dear Mr Ryan

Freedom of Information Request Reference No: 2018040000290

I write in connection with your request for information which was received
by the Metropolitan Police Service (MPS) on 05/04/2018.  I note you seek
access to the following information:

* Dear Metropolitan Police Service (MPS), Could you please: 1) confirm
to me the existence of the list referred to by Michael Hanlon in his
Sunday Times Magazine article
(https://scanmail.trustwave.com/?c=7089&a...
dated 05/05/13, relevant text at the bottom of this FoI request) and
2) on the basis of a positive confirmation, release the list as I
believe this is in the public interest. Relevant text: “There is, I am
told, a specialised unit at the Metropolitan Police dedicated to
monitoring the threat, but no one at Scotland Yard will speak publicly
about this….. ….I understand that a list is often drawn up in these
circumstances - to protect those who might be under threat from
potentially dangerous activists of any hue, not just those who are
objecting to scientists undertaking research into ME….. …..After much
persuasion, I am shown a list of activists; names that crop up time
and again on the ME forums. They are divided into three categories:
militant, radical and active.”

This is to inform you that the MPS are unable to proceed with your request
as we require further information from you.  

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within your request.
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will receive a response within the statutory timescale of 20 working days.

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and will treat it as withdrawn.

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contact me via email at [email address], quoting the
reference number above.

Yours sincerely,

Maureen McGuire
Information Manager
Information Rights Unit
 
COMPLAINT RIGHTS

Are you unhappy with how your request has been handled or do you think the
decision is incorrect?

You have the right to require the Metropolitan Police Service (MPS) to
review their decision.

Prior to lodging a formal complaint you are welcome to discuss the
response with the case officer who dealt with your request.  

Complaint

If you are dissatisfied with the handling procedures or the decision of
the MPS made under the Freedom of Information Act 2000 (the Act) regarding
access to information you can lodge a complaint with the MPS to have the
decision reviewed.

Complaints should be made in writing, within forty (40) working days from
the date of the refusal notice, and addressed to:

FOI Complaint
Information Rights Unit
PO Box 57192
London
SW6 1SF
[email address]

In all possible circumstances the MPS will aim to respond to your
complaint within 20 working days.

The Information Commissioner

After lodging a complaint with the MPS if you are still dissatisfied with
the decision you may make application to the Information Commissioner for
a decision on whether the request for information has been dealt with in
accordance with the requirements of the Act.

For information on how to make application to the Information Commissioner
please visit their website at www.ico.org.uk.  Alternatively, write to or
phone:

Information Commissioner's Office
Wycliffe House
Water Lane
Wilmslow
Cheshire
SK9 5AF
Phone: 0303 123 1113

Consider our environment - please do not print this email unless
absolutely necessary.

NOTICE - This email and any attachments may be confidential, subject to
copyright and/or legal privilege and are intended solely for the use of
the intended recipient. If you have received this email in error, please
notify the sender and delete it from your system.  To avoid incurring
legal liabilities, you must not distribute or copy the information in this
email without the permission of the sender. MPS communication systems are
monitored to the extent permitted by law.  Consequently, any email and/or
attachments may be read by monitoring staff. Only specified personnel are
authorised to conclude any binding agreement on behalf of the MPS by
email. The MPS accepts no responsibility for unauthorised agreements
reached with other employees or agents.  The security of this email and
any attachments cannot be guaranteed. Email messages are routinely scanned
but malicious software infection and corruption of content can still occur
during transmission over the Internet. Any views or opinions expressed in
this communication are solely those of the author and do not necessarily
represent those of the Metropolitan Police Service (MPS).

 

Find us at:

Facebook: [1]https://m.facebook.com/metpoliceuk 

Twitter: @metpoliceuk

References

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Dear Metropolitan Police Service (MPS),

Thank you for your reply.

In order to spare any possible ambiguity, here is the entire piece taken from the link. It is done purely in order for you to view the text (since you claimed you do not have access otherwise) and to understand, in full, the context of my request.

It is not done for any other purpose and I have no wish to break copyright laws etc.

The questions remain :
Could you confirm the existence of the list mentioned in the article?
If so, could this list please be made public?

That Sunday Times Magazine article, in full, as follows:

-----------------------------------------

(START)

“This man faced death threats and abuse.
His crime?

He suggested M.E. is a mental illness

Leading scientists such as Sir Simon Wessely, left, are facing a sustained terror campaign - just for researching the causes of M.E.

Death threats and abusive emails are commonplace, and some scientists are now under police protection.

By Michael Hanlon.

Professor Sir Simon Wessely lives on the front line of science.

He does not deal with dangerous nuclear materials; nor does he risk his life meddling with lethal microbes.

Yet this affable, chatty psychiatrist, who works at the Maudsley hospital in South London and was knighted for his work earlier this year, receives regular security briefings, has his mail checked and X-rayed by security staff and has had panic buttons installed in his office and home.

He has been subjected to abuse and death threats, and one person rang him up and threatened to castrate him.

He has done a lot of work for the military, helping to treat traumatised war veterans, but they are not the problem.

Nor does he engage in animal experimentation.

No, Professor Wessely's misfortune is to have entered the bewildering World of myalgic encephalomyelitis, or ME - initials that strike fear into the hearts of doctors.

The story of ME activism is probably not one you will have heard much about, even though it is just as controversial as vivisection.

Because not only do doctors who work in the field get a lot of grief, so does any journalist who covers the story.

I was told by more than one colleague that I was mad to even think about writing about it.

The story of ME is in fact the story of a war, a bizarre medical conflict that is about 30 years old and which shows little sign of abating.

If you take the "wrong" side in this war, the one backed by the vast majority of scientists and doctors, you will receive abuse and harassment -- or worse.

Doctors have been accused, falsely, of child abuse.

Death threats, veiled and overt, are common.

You don't even need to take sides.

You can try to be scrupulously fair, but even so, a word out of line, a slight deviation from what one side of the War sees as the gospel truth, will bring the furies down upon you.

On one side in the War are the doctors and scientists (most of them, anyway), and the bulk of the sufferers and their carers.

These people believe that ME, which affects about 600,000 people in Britain, is a real and deeply mysterious disease that is often associated with psychological problems.

The primary symptom of the disease is fatigue, which can leave sufferers bedridden and unable to work or study for months, or even years.

Most doctors who treat ME - also known as chronic fatigue syndrome (CFS) - believe that certain treatments, notably cognitive behavioural therapy and exercise therapies, provide the best hope for many sufferers to get better.

Earlier this year a ground-breaking paper was published in the journal Psychological Medicine showing just that.

These people are in the majority and they all think the ME war is, well, crazy. .

On the other side are the activists.

These people say that any attempt to label ME as a "psychiatric" illness is to denigrate the suffering and to downgrade the disease as "all in the mind".

Fiona Fox, head of the Science Media Centre, believes that the extremism of some ME activists is skewing a whole branch of medicine.

"We were deeply shocked to discover a few years ago that many scientists doing research on ME/CFS were too afraid to speak out in the media about their work, because of a campaign of harassment and intimidation," she says.

"Worse still, some had decided to leave the field completely."

Writing about all this, let alone working in the field, is challenging.

Not only must one brace oneself for the inevitable backlash, but just asking questions about ME is to unleash a heartbreaking, unmanageable tsunami of , information, claims and counterclaims, reams of data, Websites running to hundreds of thousands of Words, terrible, unreadable books and pamphlets, a maelstrom of fact, factoid, obsession, conspiracy and myth.

My first, rather uncharitable, thought was that for a group of people whose primary symptom is a lack of energy, the activists in the ME community seem to have the persistence and determination of Hercules himself.

To many of them, ME is no less than the "second Aids", a "hidden" plague probably caused by a virus similar to HIV, and which may be spreading by infection.

So there was some jubilation when, in 2009, the respected US journal Science published a paper showing that a mouse retrovirus called XMRV had indeed been identified in more than two-thirds of ME patients.

This was, it seemed, a hugely important discovery.

Patients might be able to be cured by taking the same anti-retroviral drugs now used so successfully to treat Aids.

The scientists, led by Dr Judy Mikovits of the Whittemore Peterson Institute for Neuro-Immune Disease in Nevada, were confident this was the breakthrough millions of sufferers had been praying for - that the true cause of ME had been found.

Except that it hadn't.

At the end of 2011, a hugely embarrassed Science retracted its XMRV paper after scientists at nine separate universities who had been asked to try and replicate the findings, found they could not do so.

It turned out that the original findings were, as many researchers had suspected,highly dubious.

For a start, it was later shown that the "Virus" came from laboratory contamination, and was possibly not even a virus at all.

Questions were raised about the motives of the scientists behind the discovery when it turned out that, days after publication, the lab was licensing a "test" for XMRV aimed at ME patients at $400 - $550 a pop, a "very questionable" move, according to John Coffin, one of the scientists who tried to replicate the Mikovits results.

Hundreds of patients are thought to have been tested, and it has been claimed that the lab netted tens of thousands of dollars from the tests, which were based on purely preliminary research findings.

The extremists erupted in fury.

XMRV had been the great White hope, proof at last that this was a "real" disease.

Now it was back to the drawing board for those who believed they were being demonised for having a make-believe illness.

ME is, everyone agrees, ghastly.

Symptoms include extreme fatigue, muscle pains, depression, respiratory problems and general malaise.

Sometimes, patients are bedridden and have to be fed through a tube.

The name myalgic encephalomyelitis means "muscle pain and inflammation of the brain and spinal cord", but there is no evidence that this is present in patients, so most doctors prefer the term chronic fatigue syndrome.

There is no diagnostic blood test, no identified pathogen, although it is clear that ME can be triggered by viral infections, especially glandular fever.

Few people will speak on the record about the extent of the threat to the ME researchers.

There is, I am told, a specialised unit at the Metropolitan Police dedicated to monitoring the threat, but no one at Scotland Yard will speak publicly about this.

Publicity, it seems is to be avoided at all costs, and the less said about this bizarre war, I am told, the better.

I understand that a list is often drawn up in these circumstances - to protect those who might be under threat from potentially dangerous activists of any hue, not just those who are objecting to scientists undertaking research into ME.

Some argue that circulating lists of activists - who in many cases might be mentally ill - has implications for civil liberties.

But given the nature and scale of the threat, it is unsurprising that a set of the most worrying names exists - and it is at the disposal of the authorities.

After much persuasion, I am shown a list of activists; names that crop up time and again on the ME forums.

They are divided into three categories: militant, radical and active.

Most are prolific posters on the various ME forums and Facebook pages (interestingly, Twitter seems largely immune).

In Britain the number of real extremists probably amounts to about 50- 80 people (compared with the 25 or so hard-core animal—rights extremists identified by the authorities), yet they wield influence out of all proportion to their numbers.

The greatest anger - and level of threat - is reserved for apostates.

One such was the British virologist Myra McClure, who works at Imperial College London.

Professor McClure suspected that ME may be linked to that mouse retrovirus, making her an ME heroine.

But in 2010, two years before Science published its retraction, she published a paper in which she showed that the XMRV- ME link probably had no scientific basis.

As a result, she was subjected to a campaign of horrible abuse and threats.

One activist wrote relentlessly that he was imagining watching her drown.

And a planned visit to America to speak at a conference was cancelled after "credible" death threats were made by American ME militants.

I contacted her, through a friend of hers, to request an interview, to be told that she "really wants to put this entire nightmare behind her".

The most high-profile combatant of the ME war in Britain is Wessely.

He is a politically incorrect figure who pulls no punches when describing his tormentors, shaking his head in disbelief at their energetic vitriol.

It is perhaps this impiety that has got him into trouble.

"It is a religion, they have saints and apostates," he says.

"I was at a party with someone who did not know me and we got talking - it dawned on me it was time to back off."

Wessely has been accused of just about every transgression going, including patient abuse and even, bizarrely, throwing a child into a swimming pool to check if his paralysis was genuine.

One website describes him as "a dangerous madman... an obvious sadist".

Many online postings compare Wessely to the Nazi death-camp doctor Josef Mengele, perhaps unaware that two of Wessely's grandparents were murdered, on the same day, in Auschwitz and indeed may have been selected for the gas chambers by Mengele himself.

The strangest thing, he says, is the fact that when it comes to his ME patients, he gets no complaints at all.

"Yet when I switch on the internet I get all of it, this strange, weird world which does not reflect the real world of south London and my patients."

Wessely lists his tormentors, who cannot be named for legal reasons.

Convictions, for harassment or threatening behaviour, are difficult to obtain.

The person who telephoned him to say, "We will come and get you soon", did not leave a name or address, nor did the man who said he was going to "come and cut your balls off

Wessely says the "yuppie flu" tag - a common derogatory nickname for the disease - is a misnomer. CFS is not a disease of well-off malingerers, but, like most illnesses of mind and body, strikes disproportionately at the poor and the disadvantaged.

As for the 2009 XMRV paper, Wessely snorts with derision.

He is sceptical of Mikovits, the American lead author of the paper, who was arrested in November 2011 for allegedly stealing material from her former lab and who spent a weekend in jail.

She was released without charge.

"We all knew the paper was doubtful, those rates are far too high to be credible, and I was pretty confident it couldn't be replicated. I was surprised to discover she was offering blood tests the same day the paper was released.

Four weeks later, she pops up sharing a platform with Andrew Wakefield [the discredited British doctor who purported to show a link between the MMR vaccine and autism]."

I am told there is a substantial crossover between ME activism and the anti-MMR brigade.

Another person who has incurred the the wrath of ME extremists is the Bristol - based consultant paediatrician Esther Crawley.

She runs the largest child ME treatment centre in the world, and was the first to recognise that the disease can strike at primary-school age.

Crawley has devoted her life to treating sick children with this debilitating illness.

In 2010, Crawley's team got a grant to investigate a treatment called the "lightning process", a controversial technique based on neurolinguistic programming.

Not all doctors are convinced that the lightning process is credible, yet Crawley insists it is worth investigating.

"As children and families are receiving it, we need to know whether it works or not.

If it doesn't work or causes harm, we need to know," she says.

"When we announced that we had received funding in 2010, the abuse started. It started with emails. And very difficult telephone calls. They all said we should concentrate on XMRV research.

"But the results of the XMRV research were terrible... Mikovits seemed to be implying that children go onto antiretrovirals [powerful drugs used to treat HIV infection, with strong side effects]. I thought this was completely immoral.

I gave a talk in the West Country.

I pointed out the massive conflict of interest.

The talk was doctored and sent out as a DVD.

It had me saying all sorts of things I didn't say."

Things soon got worse for Crawley - death threats, mostly online.

Overwhelmingly busy, she hoped the threats would go away and initially ignored them, but eventually she began to take notice and even considered stopping her work.

"I got nasty phone calls, nasty emails. This went on for about a year.

I contacted the police.

We had advice and training regarding parcels and so on.

I am not going to overplay it, but I felt a bit anxious going home. I have children."

She showed me some of the emails.

In one she is referred to as an "evil bastard".

Another reads: "To those of you who are responsible for preventing us sick ME sufferers from getting the help we need, wasting £5m on flawed bullshit and trying to discredit the real scientists who are trying to help us, you will all pay."

Is "you will pay" a threat?

Crawley thinks it is.

Scientists often find their work attracts controversy, even hatred.

Professor Colin Blakemore is an Oxford neuroscientist whose work on live animals has famously led to letter bombs, death threats and a barrage of abuse from anti-vivisection extremists.

But even he, probably Britain's most reviled researcher, was unprepared for the virulence of the ME campaigners.

"I didn't get bombed, it is true, but it was almost as bad," he says.

"This made no sense at all."

When Blakemore was in charge of the Medical Research Council, he made a series of recommendations about the funding of research into ME.

After concluding that the bulk of cash would be most profitably spent investigating psychological treatments, there was outrage from the "community".

"I remember being accosted at Liverpool railway station [by an angry activist]," Blakemore says.

"I was completely unprepared."

The ME extremists have, in their own terms, been hugely successful.

Only a tiny minority resort to actual threats.

More often, scientists who engage in "psychological" research are subjected to a war of attrition.

The claims always amount to nothing, yet dealing with them - and with hundreds of Freedom of Information (Fol) inquiries (as, by law, all publicly funded scientists are required to do) can eat up so much time that there is little
left for actual research.

No one argues that it is wrong for medical research to be open to public scrutiny; indeed, all the researchers I spoke to wanted their findings to be openly disseminated and discussed.

But the desire to liberate information has had some unexpected and unwelcome consequences.

"A lot of people have left the field because of this," says an exasperated Professor Peter White, a psychiatrist at Queen Mary, University of London, and one of the world's leading researchers in the treatment of ME.

"I spend a quarter of my time dealing with Fol requests, complaints and other harassment, rather than doing more research and treating patients."

In America, where ME extremism is even more virulent, doctors have been hounded out of their jobs.

William Reeves, an American virologist and co-discoverer of the link between human papilloma virus and cervical cancer, gave up his CFS-related work at the Centers for Disease Control and Prevention after a torrent of vitriol was unleashed upon him for daring to suggest that the condition was "stress-related".

After Professor Reeves died of a heart attack last August, there was celebration on some ME forums.

"He's not really dead, it's all in the mind," was the posting on dailystrength.org.

While we can all agree that death threats and abuse are beyond the pale, might the ME activists (like the animal-rights extremists) have at least an intellectual point?

It is certainly the case that the medical establishment has not treated ME with the same seriousness as other diseases, such as multiple sclerosis.

Sometimes, it has been argued by patient groups, this has resulted in sufferers being denied disability payments.

And the hypothesis that ME is, at heart, a viral infection rather than a psychiatric illness is scientifically respectable and certainly worth investigating.

Viruses, rather than lifestyle issues or genetics, are now suspected to be linked to a host of conditions, from schizophrenia to heart disease.

There is no prima facie reason to believe ME is not the same and, while XMRV is not the cause, another virus could be.

Last month, a new initiative, the UK CFS/ ME Research Collaborative, was launched to investigate all aspects, including potential causes and treatments, of this enigmatic disease.

According to White: "Many of our patients feel that their doctors have not served them particularly well. They have a real need to legitimise their illness as something beyond their control. There is real anger at not being believed."

Yet mental illness is as "real" as influenza or cancer.

Try telling someone with severe paranoid schizophrenia that they are not ill.

Are ME extremists not simply denigrating those with acknowledged mental illnesses by pouring scorn on psychiatric diagnoses?

One high-profile ME spokeswoman is the sociology lecturer Angela Kennedy, who insists she does not support the antics of the violent militants.

"As an academic myself, I unreservedly condemn any harassment and abuse of researchers.

However, raising reasonable objections to something through legitimate means - such as Fol requests or official complaints - is not harassment or abuse."

Indeed, she claims, the abuse is often in the other direction: "Hate speech is being waged against people with ME".

Few active ME campaigners are willing to comment on the record.”

(END)
---------------------------------------

Yours faithfully,

G. Ryan

Metropolitan Police Service (MPS)

Dear Mr Ryan

Freedom of Information Request Reference No: 2018040000290

I write in connection with your request for information which was received
by the Metropolitan Police Service (MPS) on 05/04/2018.  I note you seek
access to the following information:

* Dear Metropolitan Police Service (MPS), Could you please: 1) confirm
to me the existence of the list referred to by Michael Hanlon in his
Sunday Times Magazine article
(https://scanmail.trustwave.com/?c=7089&a...
dated 05/05/13, relevant text at the bottom of this FoI request) and
2) on the basis of a positive confirmation, release the list as I
believe this is in the public interest. Relevant text: “There is, I am
told, a specialised unit at the Metropolitan Police dedicated to
monitoring the threat, but no one at Scotland Yard will speak publicly
about this….. ….I understand that a list is often drawn up in these
circumstances - to protect those who might be under threat from
potentially dangerous activists of any hue, not just those who are
objecting to scientists undertaking research into ME….. …..After much
persuasion, I am shown a list of activists; names that crop up time
and again on the ME forums. They are divided into three categories:
militant, radical and active.” CLARIFIED ON 17/04/2018: Thank you for
your reply. In order to spare any possible ambiguity, here is the
entire piece taken from the link. It is done purely in order for you
to view the text (since you claimed you do not have access otherwise)
and to understand, in full, the context of my request. It is not done
for any other purpose and I have no wish to break copyright laws etc.
The questions remain : Could you confirm the existence of the list
mentioned in the article? If so, could this list please be made
public? That Sunday Times Magazine article, in full, as follows:
----------------------------------------- (START) “This man faced
death threats and abuse. His crime? He suggested M.E. is a mental
illness Leading scientists such as Sir Simon Wessely, left, are facing
a sustained terror campaign - just for researching the causes of M.E.
Death threats and abusive emails are commonplace, and some scientists
are now under police protection. By Michael Hanlon. Professor Sir
Simon Wessely lives on the front line of science. He does not deal
with dangerous nuclear materials; nor does he risk his life meddling
with lethal microbes. Yet this affable, chatty psychiatrist, who works
at the Maudsley hospital in South London and was knighted for his work
earlier this year, receives regular security briefings, has his mail
checked and X-rayed by security staff and has had panic buttons
installed in his office and home. He has been subjected to abuse and
death threats, and one person rang him up and threatened to castrate
him. He has done a lot of work for the military, helping to treat
traumatised war veterans, but they are not the problem. Nor does he
engage in animal experimentation. No, Professor Wessely's misfortune
is to have entered the bewildering World of myalgic encephalomyelitis,
or ME - initials that strike fear into the hearts of doctors. The
story of ME activism is probably not one you will have heard much
about, even though it is just as controversial as vivisection. Because
not only do doctors who work in the field get a lot of grief, so does
any journalist who covers the story. I was told by more than one
colleague that I was mad to even think about writing about it. The
story of ME is in fact the story of a war, a bizarre medical conflict
that is about 30 years old and which shows little sign of abating. If
you take the "wrong" side in this war, the one backed by the vast
majority of scientists and doctors, you will receive abuse and
harassment -- or worse. Doctors have been accused, falsely, of child
abuse. Death threats, veiled and overt, are common. You don't even
need to take sides. You can try to be scrupulously fair, but even so,
a word out of line, a slight deviation from what one side of the War
sees as the gospel truth, will bring the furies down upon you. On one
side in the War are the doctors and scientists (most of them, anyway),
and the bulk of the sufferers and their carers. These people believe
that ME, which affects about 600,000 people in Britain, is a real and
deeply mysterious disease that is often associated with psychological
problems. The primary symptom of the disease is fatigue, which can
leave sufferers bedridden and unable to work or study for months, or
even years. Most doctors who treat ME - also known as chronic fatigue
syndrome (CFS) - believe that certain treatments, notably cognitive
behavioural therapy and exercise therapies, provide the best hope for
many sufferers to get better. Earlier this year a ground-breaking
paper was published in the journal Psychological Medicine showing just
that. These people are in the majority and they all think the ME war
is, well, crazy. . On the other side are the activists. These people
say that any attempt to label ME as a "psychiatric" illness is to
denigrate the suffering and to downgrade the disease as "all in the
mind". Fiona Fox, head of the Science Media Centre, believes that the
extremism of some ME activists is skewing a whole branch of medicine.
"We were deeply shocked to discover a few years ago that many
scientists doing research on ME/CFS were too afraid to speak out in
the media about their work, because of a campaign of harassment and
intimidation," she says. "Worse still, some had decided to leave the
field completely." Writing about all this, let alone working in the
field, is challenging. Not only must one brace oneself for the
inevitable backlash, but just asking questions about ME is to unleash
a heartbreaking, unmanageable tsunami of , information, claims and
counterclaims, reams of data, Websites running to hundreds of
thousands of Words, terrible, unreadable books and pamphlets, a
maelstrom of fact, factoid, obsession, conspiracy and myth. My first,
rather uncharitable, thought was that for a group of people whose
primary symptom is a lack of energy, the activists in the ME community
seem to have the persistence and determination of Hercules himself. To
many of them, ME is no less than the "second Aids", a "hidden" plague
probably caused by a virus similar to HIV, and which may be spreading
by infection. So there was some jubilation when, in 2009, the
respected US journal Science published a paper showing that a mouse
retrovirus called XMRV had indeed been identified in more than
two-thirds of ME patients. This was, it seemed, a hugely important
discovery. Patients might be able to be cured by taking the same
anti-retroviral drugs now used so successfully to treat Aids. The
scientists, led by Dr Judy Mikovits of the Whittemore Peterson
Institute for Neuro-Immune Disease in Nevada, were confident this was
the breakthrough millions of sufferers had been praying for - that the
true cause of ME had been found. Except that it hadn't. At the end of
2011, a hugely embarrassed Science retracted its XMRV paper after
scientists at nine separate universities who had been asked to try and
replicate the findings, found they could not do so. It turned out that
the original findings were, as many researchers had suspected,highly
dubious. For a start, it was later shown that the "Virus" came from
laboratory contamination, and was possibly not even a virus at all.
Questions were raised about the motives of the scientists behind the
discovery when it turned out that, days after publication, the lab was
licensing a "test" for XMRV aimed at ME patients at $400 - $550 a pop,
a "very questionable" move, according to John Coffin, one of the
scientists who tried to replicate the Mikovits results. Hundreds of
patients are thought to have been tested, and it has been claimed that
the lab netted tens of thousands of dollars from the tests, which were
based on purely preliminary research findings. The extremists erupted
in fury. XMRV had been the great White hope, proof at last that this
was a "real" disease. Now it was back to the drawing board for those
who believed they were being demonised for having a make-believe
illness. ME is, everyone agrees, ghastly. Symptoms include extreme
fatigue, muscle pains, depression, respiratory problems and general
malaise. Sometimes, patients are bedridden and have to be fed through
a tube. The name myalgic encephalomyelitis means "muscle pain and
inflammation of the brain and spinal cord", but there is no evidence
that this is present in patients, so most doctors prefer the term
chronic fatigue syndrome. There is no diagnostic blood test, no
identified pathogen, although it is clear that ME can be triggered by
viral infections, especially glandular fever. Few people will speak on
the record about the extent of the threat to the ME researchers. There
is, I am told, a specialised unit at the Metropolitan Police dedicated
to monitoring the threat, but no one at Scotland Yard will speak
publicly about this. Publicity, it seems is to be avoided at all
costs, and the less said about this bizarre war, I am told, the
better. I understand that a list is often drawn up in these
circumstances - to protect those who might be under threat from
potentially dangerous activists of any hue, not just those who are
objecting to scientists undertaking research into ME. Some argue that
circulating lists of activists - who in many cases might be mentally
ill - has implications for civil liberties. But given the nature and
scale of the threat, it is unsurprising that a set of the most
worrying names exists - and it is at the disposal of the authorities.
After much persuasion, I am shown a list of activists; names that crop
up time and again on the ME forums. They are divided into three
categories: militant, radical and active. Most are prolific posters on
the various ME forums and Facebook pages (interestingly, Twitter seems
largely immune). In Britain the number of real extremists probably
amounts to about 50- 80 people (compared with the 25 or so hard-core
animal—rights extremists identified by the authorities), yet they
wield influence out of all proportion to their numbers. The greatest
anger - and level of threat - is reserved for apostates. One such was
the British virologist Myra McClure, who works at Imperial College
London. Professor McClure suspected that ME may be linked to that
mouse retrovirus, making her an ME heroine. But in 2010, two years
before Science published its retraction, she published a paper in
which she showed that the XMRV- ME link probably had no scientific
basis. As a result, she was subjected to a campaign of horrible abuse
and threats. One activist wrote relentlessly that he was imagining
watching her drown. And a planned visit to America to speak at a
conference was cancelled after "credible" death threats were made by
American ME militants. I contacted her, through a friend of hers, to
request an interview, to be told that she "really wants to put this
entire nightmare behind her". The most high-profile combatant of the
ME war in Britain is Wessely. He is a politically incorrect figure who
pulls no punches when describing his tormentors, shaking his head in
disbelief at their energetic vitriol. It is perhaps this impiety that
has got him into trouble. "It is a religion, they have saints and
apostates," he says. "I was at a party with someone who did not know
me and we got talking - it dawned on me it was time to back off."
Wessely has been accused of just about every transgression going,
including patient abuse and even, bizarrely, throwing a child into a
swimming pool to check if his paralysis was genuine. One website
describes him as "a dangerous madman... an obvious sadist". Many
online postings compare Wessely to the Nazi death-camp doctor Josef
Mengele, perhaps unaware that two of Wessely's grandparents were
murdered, on the same day, in Auschwitz and indeed may have been
selected for the gas chambers by Mengele himself. The strangest thing,
he says, is the fact that when it comes to his ME patients, he gets no
complaints at all. "Yet when I switch on the internet I get all of it,
this strange, weird world which does not reflect the real world of
south London and my patients." Wessely lists his tormentors, who
cannot be named for legal reasons. Convictions, for harassment or
threatening behaviour, are difficult to obtain. The person who
telephoned him to say, "We will come and get you soon", did not leave
a name or address, nor did the man who said he was going to "come and
cut your balls off Wessely says the "yuppie flu" tag - a common
derogatory nickname for the disease - is a misnomer. CFS is not a
disease of well-off malingerers, but, like most illnesses of mind and
body, strikes disproportionately at the poor and the disadvantaged. As
for the 2009 XMRV paper, Wessely snorts with derision. He is sceptical
of Mikovits, the American lead author of the paper, who was arrested
in November 2011 for allegedly stealing material from her former lab
and who spent a weekend in jail. She was released without charge. "We
all knew the paper was doubtful, those rates are far too high to be
credible, and I was pretty confident it couldn't be replicated. I was
surprised to discover she was offering blood tests the same day the
paper was released. Four weeks later, she pops up sharing a platform
with Andrew Wakefield [the discredited British doctor who purported to
show a link between the MMR vaccine and autism]." I am told there is a
substantial crossover between ME activism and the anti-MMR brigade.
Another person who has incurred the the wrath of ME extremists is the
Bristol - based consultant paediatrician Esther Crawley. She runs the
largest child ME treatment centre in the world, and was the first to
recognise that the disease can strike at primary-school age. Crawley
has devoted her life to treating sick children with this debilitating
illness. In 2010, Crawley's team got a grant to investigate a
treatment called the "lightning process", a controversial technique
based on neurolinguistic programming. Not all doctors are convinced
that the lightning process is credible, yet Crawley insists it is
worth investigating. "As children and families are receiving it, we
need to know whether it works or not. If it doesn't work or causes
harm, we need to know," she says. "When we announced that we had
received funding in 2010, the abuse started. It started with emails.
And very difficult telephone calls. They all said we should
concentrate on XMRV research. "But the results of the XMRV research
were terrible... Mikovits seemed to be implying that children go onto
antiretrovirals [powerful drugs used to treat HIV infection, with
strong side effects]. I thought this was completely immoral. I gave a
talk in the West Country. I pointed out the massive conflict of
interest. The talk was doctored and sent out as a DVD. It had me
saying all sorts of things I didn't say." Things soon got worse for
Crawley - death threats, mostly online. Overwhelmingly busy, she hoped
the threats would go away and initially ignored them, but eventually
she began to take notice and even considered stopping her work. "I got
nasty phone calls, nasty emails. This went on for about a year. I
contacted the police. We had advice and training regarding parcels and
so on. I am not going to overplay it, but I felt a bit anxious going
home. I have children." She showed me some of the emails. In one she
is referred to as an "evil bastard". Another reads: "To those of you
who are responsible for preventing us sick ME sufferers from getting
the help we need, wasting £5m on flawed bullshit and trying to
discredit the real scientists who are trying to help us, you will all
pay." Is "you will pay" a threat? Crawley thinks it is. Scientists
often find their work attracts controversy, even hatred. Professor
Colin Blakemore is an Oxford neuroscientist whose work on live animals
has famously led to letter bombs, death threats and a barrage of abuse
from anti-vivisection extremists. But even he, probably Britain's most
reviled researcher, was unprepared for the virulence of the ME
campaigners. "I didn't get bombed, it is true, but it was almost as
bad," he says. "This made no sense at all." When Blakemore was in
charge of the Medical Research Council, he made a series of
recommendations about the funding of research into ME. After
concluding that the bulk of cash would be most profitably spent
investigating psychological treatments, there was outrage from the
"community". "I remember being accosted at Liverpool railway station
[by an angry activist]," Blakemore says. "I was completely
unprepared." The ME extremists have, in their own terms, been hugely
successful. Only a tiny minority resort to actual threats. More often,
scientists who engage in "psychological" research are subjected to a
war of attrition. The claims always amount to nothing, yet dealing
with them - and with hundreds of Freedom of Information (Fol)
inquiries (as, by law, all publicly funded scientists are required to
do) can eat up so much time that there is little left for actual
research. No one argues that it is wrong for medical research to be
open to public scrutiny; indeed, all the researchers I spoke to wanted
their findings to be openly disseminated and discussed. But the desire
to liberate information has had some unexpected and unwelcome
consequences. "A lot of people have left the field because of this,"
says an exasperated Professor Peter White, a psychiatrist at Queen
Mary, University of London, and one of the world's leading researchers
in the treatment of ME. "I spend a quarter of my time dealing with Fol
requests, complaints and other harassment, rather than doing more
research and treating patients." In America, where ME extremism is
even more virulent, doctors have been hounded out of their jobs.
William Reeves, an American virologist and co-discoverer of the link
between human papilloma virus and cervical cancer, gave up his
CFS-related work at the Centers for Disease Control and Prevention
after a torrent of vitriol was unleashed upon him for daring to
suggest that the condition was "stress-related". After Professor
Reeves died of a heart attack last August, there was celebration on
some ME forums. "He's not really dead, it's all in the mind," was the
posting on
http://scanmail.trustwave.com/?c=10916&a...
While we can all agree that death threats and abuse are beyond the
pale, might the ME activists (like the animal-rights extremists) have
at least an intellectual point? It is certainly the case that the
medical establishment has not treated ME with the same seriousness as
other diseases, such as multiple sclerosis. Sometimes, it has been
argued by patient groups, this has resulted in sufferers being denied
disability payments. And the hypothesis that ME is, at heart, a viral
infection rather than a psychiatric illness is scientifically
respectable and certainly worth investigating. Viruses, rather than
lifestyle issues or genetics, are now suspected to be linked to a host
of conditions, from schizophrenia to heart disease. There is no prima
facie reason to believe ME is not the same and, while XMRV is not the
cause, another virus could be. Last month, a new initiative, the UK
CFS/ ME Research Collaborative, was launched to investigate all
aspects, including potential causes and treatments, of this enigmatic
disease. According to White: "Many of our patients feel that their
doctors have not served them particularly well. They have a real need
to legitimise their illness as something beyond their control. There
is real anger at not being believed." Yet mental illness is as "real"
as influenza or cancer. Try telling someone with severe paranoid
schizophrenia that they are not ill. Are ME extremists not simply
denigrating those with acknowledged mental illnesses by pouring scorn
on psychiatric diagnoses? One high-profile ME spokeswoman is the
sociology lecturer Angela Kennedy, who insists she does not support
the antics of the violent militants. "As an academic myself, I
unreservedly condemn any harassment and abuse of researchers. However,
raising reasonable objections to something through legitimate means -
such as Fol requests or official complaints - is not harassment or
abuse." Indeed, she claims, the abuse is often in the other direction:
"Hate speech is being waged against people with ME". Few active ME
campaigners are willing to comment on the record.” (END)

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