The Fight is on...Imperial College XMRV Study

[flex]

I've mentioned it before, I work for an Insurance company and have through my health care provision seen four seperate specialists and been offered supportive treatments, none of which were Psyc specialists. I mention this because proving someone has another interest and proving it is detremental to their other works are two different things.

By the way, even though I work in IT and not an area where I could have influence, I still have a mandatory requirement to repeat company ethics training on an annual basis and from the contents I can assure you that there is no way on this earth that any 'specialist' is being offered payment purely on the basis that their advice of research saves the company money. As a company we hang people out to dry if they fall fowl of the law rather than reward them.

Hi Holmsey,

If you stated you work in IT for an Insurance company, not an area where you can have any influence how can you go on to say the following,

" I can assure you that there is no way on this earth that any 'specialist' is being offered payment purely on the basis that their advice of research saves the company money. As a company we hang people out to dry if they fall fowl of the law rather than reward them"

It sounds a bit like a corporate statement straight out of "The bankers guide to fair play" or "The MPs guide to claiming expenses"

Are you privvy to top level board discussion that is on and of the record? Do you go into work everyday with a whistle ready to blow it on any misconduct you see?

"Payment for advice" is not the only issue. How about the old school tie mentality, "you scratch my back and I'll scratch yours"

Money being passed from company to company through a chain of events, via Swiss bank accounts etc.

Look how Wessely gets Governmnet money for his CBT and GET schemes. Straight into the accounts of compaines that he has a financial interest in. Private companies "serving the interests of the NHS" OUR BLOODY MONEY!!

 

[Esther12]

I just quickly want to add -

My understanding is that insurance companies are terrified of CFS because there's no clear biological test that can be done, so if it were treated as a serious physical illness anyone could claim they had it. They may want to discredit CFS, but they'll also want a biological test, like XMRV would provide. I don't buy into the theory that insurance companies are corruptly trying to hide a nice, clear way of diagnosing CFS. They want an identifiable physical cause, but so long as there is not one, they want CFS to be discredited. Some of the talk here can sound a bit 'Bush did 9/11'. Maybe I'm just ignorant of the evidence that allows people to make some of their more extreme claims, but I think Holmsey is right to ask people what evidence they have.

I think we all know that the 'ethics training' people at insurance companies undergo is not terribly impressive. They'll happily screw over those trying to make claims, especially those with a condition like CFS. My brother works at a Citizens Advice Bureau, and is endlessly disgusted by the way desperately ill people have been treated by insurance companies.

 

[flex]

I just quickly want to add -

My understanding is that insurance companies are terrified of CFS because there's no clear biological test that can be done, so if it were treated as a serious physical illness anyone could claim they had it. They may want to discredit CFS, but they'll also want a biological test, like XMRV would provide. I don't buy into the theory that insurance companies are corruptly trying to hide a nice, clear way of diagnosing CFS. They want an identifiable physical cause, but so long as there is not one, they want CFS to be discredited. Some of the talk here can sound a bit 'Bush did 9/11'. Maybe I'm just ignorant of the evidence that allows people to make some of their more extreme claims, but I think Holmsey is right to ask people what evidence they have.

Esther

Insurance companies are going to have some mind boggling sums to pay out when CFS is proved, including back payments over decades of denial of inllness, loss of earnings, mortgage protection etc etc. Then they will have to pay for the life long treatments of people with ME when big pharma takes over with expensive drugs. This country is practically bancrupt due to the banking fiasco. All our National Insurance contributions are under written by large Insurance companies.

Dont forget the UK government is an insurance company. ie/ pay into the system and get treatment when you are ill. Then claim years of compensation for medical neglect when the cause is found and teams of laywers descend upon the government for mal practice and denial of an illness coded by the WHO since 1969.Do you remember the Thalidamide issue. This is a million times that.

Insurance companies have been in bed with the psyche lobby and Simon Wessely, The "right honourable" Minister for Denial for years. Are insurance companies actually paying out now on CFS claims, I'm not sure they are. So why would they want it to be proved as a chronic physical illness?

 

[Min]

from http://www.meactionuk.org.uk/Notes_on_the_Insurance_issue_in_ME.htm

"...Current situation

Evidence exists which confirms the association of these psychiatrists with the insurance industry. The ME community is well aware of the long-time involvement of Michael Sharpe with the insurance company UNUM, of his association with Allied Dunbar and of his recommendation to insurers that claimants with a diagnosis of ME/CFS should be subject to covert video surveillance. The ME community is also aware that on 17th May 1995 Mike Sharpe and Simon Wessely were the main speakers at a UNUM-supported symposium held in London entitled Occupational Health Issue for Employers (where ME was described as the malingerers charter) at which they advised employers how to deal with employees who were on long-term sickness absence with CFS. Moreover, in UNUMs Chronic Fatigue Syndrome Management Plan, ME/CFS is described as Neurosis with a new banner and the same document states UNUM stands to lose millions if we do not move quickly to address this increasing problem.

The insurance companies known to be involved in ME/CFS claims include, in addition to UNUM, Swiss Life, Canada Life, Norwich Union, Allied Dunbar, Sun Alliance, Skandia, Zurich Life and Permanent Insurance, and as Re-insurers, the massive Swiss Re (not the same as Swiss Life). Swiss Re are currently building a huge circular eyesore in London which has been dubbed the gherkin. These insurance companies all seem to be involved in RE-INSURANCE; for example, Norwich Union uses Swiss Re and psychiatrist Peter White is one of the Chief Medical Officers for Swiss Re. Their other CFS experts are Michael Sharpe and Simon Wessely, and they also use psychiatrist Anthony Cleare (a frequent co-author with Wessely who works in the same department) for the insurers. There seem to be two ways in which claims are underwritten between insurers and re-insurers: either the insurers agree to pay claims up to a pre-determined cut-off limit, after which the re-insurer becomes liable, or else the insurer and the re-insurer agree from the outset to share the costs of a claim.

This means that there is little hope of an ME claim succeeding, because both the insurers and the re-insurers all use the Wessely School psychiatrists to inter-refer claimants with ME/CFS. Given that insurers can refuse to pay out on claims until the claimant with ME/CFS has undergone a rehabilitation programme arranged by the insurer, this must surely result in a major conflict of interests because Peter White, Michael Sharpe and Wesselys assistant Trudie Chalder (a former mental nurse who obtained a PhD and who seems often to be used as a grant front by Wessely) are the beneficiaries of the MRCs latest 2.6 million grant to strengthen the very weak evidence that cognitive behavioural therapy (CBT or brain-washing) and forced rehabilitation programmes (graded exercise therapy or GET) actually work for those with ME/CFS, but the clear evidence is that they do not, and are in fact harmful.

Given that research funds are said to be so limited and particularly in view of the scathing criticism of the work of the MRC detailed in the recent (March 2003) Report of the House of Commons Science and Technology Select Committee (reference: The Work of the Medical Research Council HC132), what is the MRCs explanation for funding a four-year project by these psychiatrists on yet more psychosocial research into CFS/ME in preference to funding soundly-based projects on the known biological abnormalities which underpin this disorder? The Select Committee Report constituted an unprecedented attack on the workings of the MRC, finding that research funding was wasted on useless projects, but Wessely seems unpeturbed (and has now left the Boards on which he served)..."



"...

Members of Parliament are on record as being gravely concerned about the difficulties which their constituents with ME/CFS suffer at the hands of the disability insurers, as recorded in the House of Commons debate chaired by Sir Alan Haselhurst on 21st December 1999 (reference: Hansard 147WH-166WH). In particular, Members of the Scottish Parliament are very aware of the involvement of Mike Sharpe with the insurance industry and with the processing of claims due to ME/CFS and are extremely concerned about the situation.

It is known that insurance company tactics are firstly to deny ME/CFS claims, then to delay the processing of those claims which they have not managed to destroy, then to discredit the claimant by such ploys as covert video surveillance, supported by the supposedly independent opinion of the insurers medical officers (ie. this group of UK psychiatrists). The primary aim of the insurance companies is known to be to avoid paying out on claims. Recently there has been much international publicity about UNUM, with the exposition in Courts of Law of their strategy not to pay the valid claims of their policyholders (including those with ME/CFS). Most vulnerable are policyholders with so-called subjective illnesses like ME/CFS...."

 

[Esther12]

@ Flex: I'm not sure. The cost of people on disability benefit, housing benefit, other means tested benefits... the lack of taxes from their employment: CFS is already really expensive for the government. If it really is related to XMRV, they're going to want to stop the spread as soon as possible. Even if we assume they were utterly corrupt and immoral, I still don't think it makes sense for them to be deliberatly avoid acknowledging a clear biological cause for CFS.

 

[Min]

@ Flex: I'm not sure. The cost of people on disability benefit, housing benefit, other means tested benefits... the lack of taxes from their employment: CFS is already really expensive for the government. If it really is related to XMRV, they're going to want to stop the spread as soon as possible. Even if we assume they were utterly corrupt and immoral, I still don't think it makes sense for them to be deliberatly avoid acknowledging a clear biological cause for CFS.

Well the UK Medical Research Council have given nearly every penny of UK taxpayer research funding to the same group of psychiatrists (known to work for health insurance companies) since the 1980s; these have deliberately used criteria that selects psychiatric patients for research instead selecting of those with neurological M.E. by using the Canadian Consensus Criteria .

It hardly seems likely that they ever want a biological cause to be found.

It would cost the National Health Service a fortune to treat and treat a quarter of a million people for XMRV and for the many, many other pathogens known to exist in M.E. It is much cheaper to deny us all biomedical testing except basic tests that they know will show nothing wrong, and to pretend that those who don't get better by CBT & GET are choosing to be ill, then we can be denied benefits too. Many will then conveniently remove themselves from the altogether by committing suicide.



(One of the psychiatrists involved was responsible for denying that the Camelford Water Poisoning outbreak existed:

http://meagenda.wordpress.com/2007/12/15/one-click-comments-on-daily-mail-camelford-article/

-corrupt and immoral?)

 

[flex]

@ Flex: I'm not sure. The cost of people on disability benefit, housing benefit, other means tested benefits... the lack of taxes from their employment: CFS is already really expensive for the government. If it really is related to XMRV, they're going to want to stop the spread as soon as possible. Even if we assume they were utterly corrupt and immoral, I still don't think it makes sense for them to be deliberatly avoid acknowledging a clear biological cause for CFS.

Esther you keep using the term"CFS" as a British person Im not sure you understand the argument. ME is not CFS.
CFS is a blanket term thrown over depressed people, undiagnosed MS, undiagnosed sarcoidosis, and other undiagnosed neuro immune problems like ME.

The insurance companies devised this term in the eighties and it is expessly recognised as not being the same condition by the WHO. CFS means Nothing and anything in the UK!!

Next, insurance companies have devised a way of applying this blanket term to everybody, by denying them medical investigation and then saying they are medically unexplained so by default they must have a psychiatric illness.

If you read the small print of most insurance policies they try to worm their way out of payouts if the cause of illness is "psychological" The goverment also does the same and tries to pay benefits at a lower level.

As for Housing benefit etc, people would still get that anyway if they were not working for whatever medical reason.

If ME is proven, then Government and insurance companies would still have their existing obligations plus BILLIONS more to the ME community as well as admiting to decades of medical negligence including contaminating the blood supply. How much of a public health scare would that be? How much would it cost them in litigations?

Do you care to work out the sums? Hope you have got a VERY big calculator!!

My original Diagnosis was most likely MS. Now it has moved onto " CFS" as I battle to get the tests that I need they are being denied to me. If you have "fatique" as one of your symptoms it doesnt matter what your illness actually is you just get told you have CFS. Does that make sense to you? If a doctor tells you you have ME and you say " oh the Neuro Immune disease coded by the WHO" he immediately bactracks and says you have CFS and writes that on your NOTES.

If XMRV is proven Im not sure 250,000 ME sufferers are going to jump out of their bed into 100k a year jobs and pay 40k intaxes to the goverment. Especially as the goverment will put a block on the licensing of the drugs. Where are these 250,000 jobs in the economy anyway?

Goverment/politicians like vote winners, like "CFS patient are weak and lazy spending everyones taxes" They dont care about the long term future when they may not even be in power! If they are they can just pick on another group to win votes.

Im just about to reapply for Disabilty Living Allownce with ME or CFS instead of most Likely MS. I wonder what a battle I will have on my hands?

Ill keep you informed!

 

[Esther12]

I agree with a lot of what you say, but still don't think that leads to the conclusion that it would make sense for the UK government to deliberately avoid recognising a clear physical cause for people's fatigue. It think that they are dealing with the uncertainty that surround CFS in an incompetent and immoral manner, but that's quite different. Bureaucracies (and people) often suck at dealing with uncertainty.

Good luck with the DLA. I just went through that, and got approved at my second tribunal after 18 months struggle. The first one was a nightmare, with the doctor making it quite clear he didn't think CFS was a 'real' illness and I then ended up implying he was a quack. Get legal help early imo - the way the guidelines apply to CFS is so vague that a lot depends upon interpretation, and you need to be careful with the way you phrase things. I got sucked into trying to win a philisophical debate with the DWP, and it would have been much easier if I'd just played the game.

 

[DysautonomiaXMRV]

Are people with ME (Myalgic Encephaloymeltisi) complaining of 'fatigue' though?

Or cardio respriatory difficulties (chest pain, tachycardia, low/high blood pressure, laboured breathing)?
Or low core temperature leading to shaking, or easy onset hypothermia without artificial heating.
Or chronic nerve/muscle pain caused by inflammation?
Or balance loss worsened by standing upright/walking lead to vomitting, and or nausea
Or inabilty to control blood sugar swings despite diet?
Or convulsions/seizures?
Or heart arryhmia's leading to admission to ER/Accident & Emergency in hospital
Or gross levels of orthostatic inotlerance leading to inabilty to stand/shower/walk - not caused by deconditioning?
Or significant cognitive impairment/confusion leading to accidents in the home (burns, trips/falls) and getting lost in the community?
Or unrelenting exhaustion that can speach to zero, or a whisper - worsened by minimal physical/mental effort?
Or Autonomic nervous system dysfunction?
Or Chronic immune activation with supression leading to life long sore throat/cough/frequent upper respriatory tract infections?
Or significant unexplained weight loss, with/without muscle wasting?
Or tremor, new onset of stammer/slurring of speech/blurred vision?
Or drop in IQ, and lowering of abilty to spell and compute/understand simple cognitive tasks.
Or erectile dysfunction in males, ending any possibility of intimacy due to poor cardiac output and shortness of breath?

The above describes what people with ME (Myalgic Encephalomyeltis) patients suffer from, and 'fatigue' isn't even on the list.
Hence ME (Myalgic Encephalmoyelitis) is not 'CFS' - a syndrome of chronic fatigue or 'long term tiredness.'

Ironically many of our North American friends outside the UK have been wrongly labelled with this name CFS and use the label CFS when they mean ME.
(There was a push years ago for North Americans to use the term 'CFIDS' but this was, sadly, not used by leading clinicians such as Levine, Klimas, etc).
who could have insisted upon the name instead of joining in with 'CFS').

Doctors then, have unfortunately helped encouraged the myth of 'CFS' being a severe neuro immmune disease - because although CFS contains a severe
neuro immune disease within the name, it is actually only an umbrella term for many conditions including mental illness induced 'fatigue', or indeed any form of fatigue.
(ex drug use, ex chemotherapy exposure, head injury, post natal depression). <-- All of these are nothing to do with a post viral/persistant viral fatigue
syndrome and ME (Myalgic Encephalomyelitis).

CFS is a silly name, and should really only be used if one is clear (making clear) what exactly their 'CFS' is to them.
It's many things to many people - which Diabetes, Asthma, Parkinson's, Cystic Fibrosis is not.

Patients need one terminology, and an accurate one at that.
This is why, although utterly infuriating to people with ME CFIDS or neuro immune CFS, it is perfectly normal to see someone claim they cured 'CFS' by unproven psychological therapies,
willpower, positive afirmation, CBT, bird watching, finding a new religious calling etc.

Currently XMRV induced CFS is 'OK' as a temporary measure, it PROVES a retro viral causes to a state of CFS.
However, the 99.9% of other people who haven't had XMRV test and remain severely ill with neuro immune disease cannot possibly use the label
'CFS' - due to it's multi meanings.
XMRV induced CFS needs a new name. CFS has to be 'unexplained' and XMRV is infecting Natural Killer Cells, causing oppportunistic infection - and
infections can cause a state of exhaustion. So CFS no longer remains 'unexplained' in XMRV infected individuals.
'We' patients, outside North America who are severely diseased - are sensibly CFS 'phobic', and (if we meet the criteria) we use the term ME (Myalgic Encephalomyeltis).

Which is nothing to do with 'fatigue'.

There remains the tragic situation (for patients and families) that people with endless reasons for being either: tired, depressed, diseased/infected, anxious, nerve damaged, or even dead - all use the term 'CFS'.

This must change.

 

[flex]

Esther,

Thanks for your support on the DLA issue.

Quite a lively debate we just had. Maybe we are both right if you look at it in these terms:

Who is the government ?

Jeffrey Archer went to prison for fraud, yet Winston Churchill liberated us from Nazi rule. They were both in the Government. Perhaps where you find money and power you find "politicians" where you find a cause you find Advocate MPs ( not many of them left). There is a big difference between Ghandi and Robert Mugabee. The point I make is the corruption one, where once you tell a lie you have to keep going. Have you watched "the Thick of it" or the film "In the Loop" ? So funny! Clips on YOUTUBE

Is it right that by law DLA is based on your symptoms and how they affect your life not your diagnosis? do you know the answer to that? Should I go with that approach?

 

[flex]

Ironically many of our North American friends outside the UK have been wrongly labelled with this name CFS and use the label CFS when they mean ME.
There was a push years ago for North Americans to use the term 'CFIDS' but this was, sadly, not used by leading clinicians such as Levine, Klimas, etc.

Doctors have, unfortunately, helped encouraged the myth of 'CFS' being a severe neuro immmune disease - because although CFS contains a severe
neuro immune disease, it is actually an umbrella term for many conditions including mental illness induced 'fatigue', or indeed any form of fatigue.
(ex drug use, ex chemotherapy exposure, head injury, post natal depression). <-- All of these are nothing to do with a post viral/persistant viral fatigue
syndrome and ME (Myalgic Encephalomyelitis).

CFS is a silly name, and should really only be used if one is clear (making clear) what exactly their 'CFS' is to them.
It's many things to many people - which Diabetes, Asthma, Parkinson's, Cystic Fibrosis is not.

Patients need one terminology, and an accurate one at that.

Currently XMRV induced CFS is 'OK' as a temporary measure, it describes a retro viral causes to a state of CFS.
However, the 99.9% of other people who haven't had XMRV test and remain severely ill with neuro immune disease cannot possibly use the label
'CFS' - due to it's multi meanings.

Hence 'we' outside North America who are severely diseased - are sensibly CFS 'phobic', and (if we meet the criteria) we use the term ME (Myalgic Encephalomyeltis).

Which is nothing to do with 'fatigue'.

I was thinking about all of the above earlier today. It made me ask the following questions:

Why does the US and Canadian patient community accept the term CFS for a ME?

Do Doctors in N. America ever use the term ME?

Was there no ME in N. America before the CFS term was devised in the late eighties?

How can we move on with so many confusing Names?

 

[V99]

In Scotland, correct me if I'm wrong, but they use the canadian guidelines for ME and the NICE guidelines for CFS.

 

[Esther12]

@flew,

My understanding is that it does make a difference whether your diagnosis is psycholoigcal or physical, but for CFS they should let it be treated as whichever will benefit you the most. The guidelines for CFS seem quite fair (depending upon the interpretation) but they just leave so much wiggle room that they can easily be distorted by the prejudices of whoever makes the decision. You really benefit from a supportive GP. Mine is quite, but his report still nearly caused a lot of trouble. It's really best to try to talk to them in advance, but what you say to them wil have to be based upon the type of relationship you have. Try not to take it too personally - it's a rubbish system, and it can feel really abusive at times. I'd really try to get some outside expert advice - CAB? I got help from the legal advice section of a Housing Trust and they were really good.

I definitely think that the approach taken to CFS seems more like somthing out of The Thick of It than an intentional conspiracy. It's a difficult to understand illness, and I don't think anyone in government is that interested.

 

[Dr. Yes]

(One of the psychiatrists involved was responsible for denying that the Camelford Water Poisoning outbreak existed:

http://meagenda.wordpress.com/2007/12/15/one-click-comments-on-daily-mail-camelford-article/

That psychiatrist would be one Simon Wessely, author and cohort selector of the Imperial College study.

 

[Sparklehorse]

Government + psyches + insurance connections

For those who don't seem to see the connection between Government, psyches, the insurance industry, the benefits system and their potential benefits for portraying ME/CFS as a psychological condition, please see the following link about the recently Knighted Mansel Aylward, Director of the Unum Centre for Psychosocial and Disability Research at Cardiff University, Wales:

http://www.publicmentalhealth.org/page.cfm?orgid=749&pid=30424

He has VERY close links to the Government and has followed an agenda of trying to prove that ME/CFS (and similar illnesses) can be treated with psychological therapies such as CBT and GET with the SOLE purpose of getting people back to work. It is in their interests not to prove that ME/CFS is a physical illness because that WOULD cost them more money to treat, to pay benefits for etc etc. By saying that ME/CFS is NOT physical but a mental condition wholly treatable by their proposed treatments, i.e CBT etc, they CAN save money by forcing people off benefits (if they can) and taking them away if they don't follow their treatment protocols etc. This is already happening by removing people from the higher benefits levels etc. This is also in the interests of the insurance industry who have close links to Government. See how this Research centre is financed by UNUM.

This plan has been going on for years (PACE and FINE are part of it all) It is designed directly against ME/CFS patients. Aylward and Wessely, White, Sharpe, the lot of them are ALL linked. There is no doubt at all about what is going on. None.

 

[Esther12]

with the SOLE purpose of getting people back to work.

Actually, some of the raw pragmatism, and the limited scope of the way 'functional' illnesses are defined and treated could well be driven by financial considerations. I hadn't really thought properly about how that related.

 

[duendeni]

Just to say, I'm acually gobsmacked by what a big community we are here. If we can channel this much energy into a discussion of this callibre, we can certainly manifest the gusto to make positive political changes! Don't despair. x

 

[flex]

In Scotland, correct me if I'm wrong, but they use the canadian guidelines for ME and the NICE guidelines for CFS.

Im not exactly sure but it wouldnt surprise me. Scotland and Wales are usually miles ahead in these issues thanks to their independent parliaments taking such things to task.

If that is true Im of to Scotland for a diagnosis. No joke!! Anybody know a good Doc in Scotland who understands ME not "CFS"?

 

[flex]

Actually, some of the raw pragmatism, and the limited scope of the way 'functional' illnesses are defined and treated could well be driven by financial considerations. I hadn't really thought properly about how that related.

Hoorah!!! You finally get it, are you new to the debate?

I was just about to say "Auch, Esther amm awa tee boil ma heed in a pan ay IRON BRU!!

No offense, just a turn of phrase!

 

[joyscobby]

Hoorah!!! You finally get it, are you new to the debate?

I was just about to say "Auch, Esther amm awa tee boil ma heed in a pan ay IRON BRU!!

No offense, just a turn of phrase!

Translation: I am away to get lost

uaualy directed at some one: as awa an bile yer heed

Saying- go and boil your head when you are light heartidly telling some one to get lost, go away.

A non offenceive way to say not I am not going to argue or discuss this any longer

Iron Bru a soda which is parculuar to Scotland