The Fight is on...Imperial College XMRV Study

Thar's brilliant work Mark! Your maths is better than researchers who are '1000% positive' there is no XMRV in the UK.

That would be a good plan, Kurt, but the UK doctors believe that giving people tests will just make them think they might have a physical disease so you don't do any. I think they were reluctant to do even the most basic ones but were forced to do some.

One TV programme an ME "expert" spoke about doctors who colluded with patients and made them much sicker by doing tests.

The only test I have had done in the last twenty years was part of a research project where they dropped acetylcholine on your arm and measured how long it took for its effects to wear off. There is no way to influence it so the technician explained what was happening and how I had an abnormal system typical of what they were finding in other ME patients. It was simple, objective, non intrusive painless and cheap. (A study by MEresearchUK)

Mithriel

That TV program sounds like what one would expect of real somatoform patients. They would indeed become sicker with more testing, believing they have more illness. Sounds like the UK doctors actually NEED some training in psychiatry/psychology. They should be able to make that differential diagnosis for ME vs somatoform illness.

There is a lot of unfortunate cross-over of presentation between true somatoform illness and many other illnesses, this is not just ME/CFS. People with Lyme Disease, MS, heart problems, organic sleep disorders, even food poisoning have been misdiagnosed as somatoform.

We really need a lot of doctor re-training, starting with the Hippocratic oath. Misdiagnosis of ME/CFS causes harm.

ATOS and role in benefit denial

This was reported on BBC Scotland and highlight the role of ATOS in the UK benefit system.

http://news.bbc.co.uk/1/hi/scotland/8465122.stm


If cancer patients have problems imagine what an ME patient faces.

anyone on here lost any comments on plos one

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Original Article Failure to Detect the Novel Retrovirus XMRV in Chronic Fatigue Syndrome
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I think in the UK, any diagnosis of CFS causes harm.

Re: The Economist Article - We need "in the trenches" doctors to write in support

It really is a shame that the doctors who treat the CFIDS/ME people every single day are not able to respond to all of these stupid, irresponsible comments put out on the Internet. IF my brilliant Internist were to sit down and write responses to just some of these stupid comments, he would hit so hard these people would be on their backs. My internist has been treating us sick for more than 18 years - since he started out and because the NIH kept sending him all their sick people because they didn't know what to do with these sick people and needed to keep them out of the hands of the Snake Oil "doctors".
But my internist is so overworked dealing with us CFIDS sick - and all his other patients - that he simplly can not respond. And this is a big problem. We have the great doctors like Bell, Peterson, Cheney, Klimas, and so on who do hit hard in the press but we need those doctors in the trenches who deal with several CFIDS sick every single day and hear and see the same things over and over. I can spot a CFIDS sick person and have and shocked those people that I spotted. It ain't hard!
The problem is that I really think that Wessely and Reeves really have NOT ever seen true sick CFIDS people. They have never listened to us repeat, over and over, our symptoms that are so similiar you can't help but conclude that CFIDS people are terribly sick.
It is a shame that the real doctors in the CFIDS trenches are not able to respond. THEY are the most credible of all - not the researchers peering into the microscopes, but the poor men and women who have to spend so many hours with us trying in vain to help us with sleep, pain, GI, cognitive and personal issues (brought on by CFIDS). One letter, one well written letter with great real-world data, from all of these doctors-in-the-trenches signed by all (or as many as possible) would help us greatly. But I willl not be the one to ask my poor, overworked, exhausted internist to write that letter. I fear that he too will go down and stay down from killing himself taking care of us - and I can't have that.

Does anyone have a good "in-the-trenches" doctor who would write a well-written letter that could be put out into the internet for all to see?

If I and others in the UK have tested positive for XMRV, then the Imperial College (IC) study is proven not only scientifically invalid (through it's methods of incorrect cohort selection and a PCR test that cannot detect XMRV) but also irrelevant. Why is the IC study irrelevant? Because if UK patients exist (not in theory but in reality) who are infected with XMRV, and this XMRV was through a cell culture test from VIPdx - then XMRV exists in the UK. If XMRV exists in the UK, then the results of the IC study don't matter at all. Hence it's irrelevant. The IC could produce a study every day saying XMRV doesn't exist in CFS until the end of time, yet patients like me are proof the results are false, and false every time if you select the correct patients and use a test that works.

The media don't know this fact about UK XMRV patients being positive. No one has been contacted by any UK ME charity regarding XMRV and no ME patient with XMRV is bold enough to go on TV - as they value their life. We aren't stupid. We know it's the state vs us. When 10,000 people get tested - then we'll come out. Safety in numbers. XMRV will cost the UK economy billions, it already cost the UK tax payer tens of millions per year and it's still hidden and doesn't exist. Think of the costs. Who's going to pay for it? Better to silence the patients. First step, make sure you don't repeat the WPI study's findings. Second, make sure the ME Association has a very cautious tale on the whole affair and the other charities, say nothing - but make sure you DO publish the failed UK XMRV study by the IC. This is EXACTLY what has happened and is ENTIRELY predictable.

This will prevent (temporarily) the tidal wave of patients demanding the test on the NHS (UK social health system provided by the Department of Health). Tests cost money, and tests VALIDATE you as someone with a neuro immune disease, not hysteria. CFS is seen as hysteria by the majority of UK doctors. If we are continued to be see as hysterics, then this is a lot cheaper and no fingers get pointed as to who stuck a mouse's DNA in the human blood supply.

Professor Simon Wessely and friends may believe ME (CFS) is 'Neurosis with a new banner', yet this is not the case by official classification. CFS in the UK may include mentally ill people (OXFORD '91 Criteria), but that is just here. CFS outside the UK is not classified as a mental disorder. End of. Thus any 'theory' on mental processing being used to explain CFS symptoms - is void. Just as if I had a theory on mental processing causing MS.

It's like in the days when HIV was called 'Gay Flu'. When evidence of HIV existed in non gays, then it was clear that HIV was not a 'gay' disease. ME was referred to as 'Yuppie Flu'. When evidence of ME existed in working class children, then it was clear that ME was not a 'Yuppie' disease. Both HIV and ME have one critical common point here: An infectious retrovirus. Viruses don't chose: class, culture, background, wealth or belief system. Viruses infect people, period. So now we know we're infected if we have ME (or meet the Canadian Criteria for CFS), what's gonna happen? Do we continue the myth of 'debating' XMRV exists in the UK, or do we move on?

Everyone is free to continue the debate of the IC study and it's legitimacy for another 126 pages if they like, but it's illogical. Why? The IC study claimed there was no XMRV in the UK in CFS.. My diagnosis is ME, which the UK call CFS. Also Dysautonomia (POTS) and I'm XMRV+ . Game over for the debate then over if CFS patients have neuro immune disease, proof exists. The UK or any other country does not require a group of denialists to admit they were blinkered. They cannot admit it, their whole life's academic work has been based on stating ME and CFS is due to 'faulty illness beliefs'. Best way to continue that, is to find no XMRV. Which happened not by chance. Of all the doctors in the entire UK, if doing a study on XMRV would you
chose someone who is a military Psychiatrist (known around the world) to state ME and CFS does not exist as an organic disease process? Of course not. The IC study HAD to chose this person, in order for it to fail. This person hand picked the patients used in the study. That is corruption par excellance.

Denying proof of XMRV in the UK IC study, is not the existence of proof of XMRV in UK patients, it's just denial. Denial when facts exist is unscientific, immoral and wrong. It's only continued by those who gain from the 'debate'. We all know who stands to gain, and why. What a coincidence the comments on the PLoS one web site have been accidentally on purpose, deleted. Comments that gave further insight into the IC study and it's flawed methods. None of this matters. A lot of the time people (including me) are stuck in the trenches firing the 'proof' gun in desperation to be verified as genuine, to be believed, to not be mocked to be accepted because we are desperately sick with no medical help.

Well the war is over, and it was a political war. No one 'won'. The truth fell out of someone's pocket onto the battlefield, that was all. A private American family funded research and scientists found the letter with the explanation. Not government scientists though. They were too busy in America on their '5 Year' CDC study and the UK was completing curing people over the telephone via 'Nurse led' therapy. How does XMRV make them look? Idiotic at best, and corrupt at worst. Hence they are terrified of people finding out they are infected. Well I found out. I didn't need to debate it or ask for approval first. (I jumped the queue with the kind help of a fellow sufferer). You can too. You don't need to 'wait'. You cannot have a false positive XMRV culture test.

Why do you think people say wait? Think about it. You're left in the lurch, you're not aware WHY you are sick. And thus you cuddle and stroke the label CFS, that still bites you, despite how much care and attention you give it. If 0.1% of people with CFS have XMRV, who cares? I don't. Do you care if the guy down the road has a disease or not, or if he is 'legitimate' or not? Of course not. You and I, we're stuck in a neurological networking mode of operation. We operate as a 'group'. I wonder if she has, I wonder if he has.

We got like this out of being left to rot by health agencies. We needed advise of other people, as no one gave us any. We waited for tiny updates on 'charities' for ME and CFS to 'steer' us the correct way. Do you still need this advice? Are you not capable of knowing, deep down if you have blatantly obvious signs/symptoms of neuro immune disease? And thus, no one needs to 'wait' another 1 year, or 2 years if you are very sick and get no medications, no social welfare payments, and no respect.

XMRV awards you instant respect. Respect you always deserved but never got. People who never talk to you as 'they had a cousin like you too' (who of course is 'cured) now talk to you. By signing up to 'team CFS' because you never had anything else, you maintain yourself at the bottom of the little league. The thing is, you never wanted to be in a league, you're sick and you just wanted to know what on earth was going wrong with you - now you can have a go at finding out. Leave the team and start a new life outside of a group of people who appear to be like you, who are like you, who are not like you. Find yourself. Remember you are Tony or Jill and you're just infected that is it. You aren't a PWC. That brand got you nowhere.

XMRV is in the UK and it's real and it's infectious and you can get a blood test done NOW in the USA from VIPdx. An XMRV culture test, gold standard, un-arguable proof. That's all you need. A little piece of paper. Not a fully referenced Harvard argument - like I used to produce days ago for the last 18+ years. My way to academically compete with the denialists. That's all over.

How can your disease not be XMRV if severely disabled by 'unexpalained' neuro immune disease? How can you have the disability of someone with COPD/MS or heart failure whilst testing negative for everything - yet you get out paced by a 95yr old and you're 30. How can you have a 'normal' blood work up at the doctor's but you are too short of breath to walk up the staircase, never mind walk to the mailbox? XMRV is why. Chronic viral infection is why. Blown ATP/Mitochondrial function is why. No blood in your brain, is why. Broken brain networks that cause Dysautonomia is why. Who else has a life like this, like you? No one. How strange. Not strange if you have an infection that pole-axes you.

A blood test (culture) is all you need. I'd get one if I was very sick, so I did just that and it's positive. And that my friends, is the Wessely Schools ultimate nightmare. So go ahead and create it for them, by getting tested in the next 6 months, not 2 years. You'll go from a pariah of society, a disbelieved 'joke' who needs CBT and Graded Exercise to someone seriously sick - that you were anyway. You just never had any proof. Now proof is available from the USA. Don't forget that. Haul yourself out of your trench and lay on your back, and take a deep breath. The realisation you've all been 'had' by a political conspiracy for the last two decades is not a nice one, but it's one that needs to be realised if you suffer from neuro immune disease that is 'unexplained'. WPI just gave us a translation manual - and now all is clear.

Lastly, remember also to toss aside the 'group' mentality of proof. You don't need your neighbour to drive a red car, to make your red car - real. Similarly, you don't need anyone else in the entire world to test positive for XMRV if they have the label CFS, bongowongoland, or ME. What matters, is that YOU have it. Not 67% of people or 0.0000000% of people , but you.. So when studies like the IC, or anyone else cannot 'find' XMRV (as will happen), then ignore it. This life is about you, no one else.

Exhilarating!


BRAVO DysautonomiaXMRV!

Just one problem here. XMRV hasn't been proven to cause CFS, Dysautonomia or anything else yet. That's all the official establishment, insurance companies, etc. need to say, "so what, you're XMRV+, doesn't prove you're sick - so is 3 to 4% of the general population". We've been down this road before with Epstein-Barr and HHV6 among others.

That's also the value of the IC paper. It can be pointed to as refuting the WPI findings, even though it may be a joke. It exists and that's enough to say "the science isn't settled" Just look at the climate change argument if you doubt what I'm saying.

There are plenty of reasons to wait for testing that have nothing to do with politics. I think the fact that most if not all of the CFS clinicians haven't tested their patients is evidence that there's no conspiracy. It's just very early in the process, very expensive and will improve in it's sensitivity with refinement just as all of these tests do. But if someone will feel one tiny bit better getting the test, that's good enough to go for it. And anyone who can participate in the clinical trials should do so.

My prayer for us all today is that we regain our health, by whatever means and by whatever name.

WOW Dys, !!!! Is this what you did while you were "taking a break", "resting"????

Awesome!!!!
:victory::victory::victory:

DysXMRV

I can accept that a positive test for XMRV may provide you with some personal validation but then you have always known you were ill.

Aside from this I don't see what additional practical value there is at this stage.

As has already been said, the people that can materially affect the quality of our lives, the medical profession, insurance 'providers', government benefits agencies etc, all operate within standard officially sanctioned parameters.

Take your local general practitioner. As the name implies he/she is a generalist, the first port of call for ailments from the common cold to terminal cancer. They are not specialists and not researchers. Their knowledge of ME/CFS will either be minimal, informed by the official guidelines of what it is and how its treated, or if you are really lucky, sympathetic but unable to help.

What do you think a GP will do with this information? If the GP is one of the enlightened ones they may find the test results interesting, might even add a note to your records, but they will not run further tests or suggest any treatments that are not officially sanctioned by 'NICE'.

As an analogy, in the early days of my illness, my GP took the usual 'look at the symptoms one at a time' approach rather than any sort of holistic overview. Hence I was referred to the local hospital for investigations into my gastro problems. They ran the usual range of upper and lower gastro tests : endoscopy (both ends), biopsy, barium enema (not fun!), stool analysis etc.

What they found was that I had a fat malabsorption problem and apparently there are three causes of fat malabsorption (can't recall what they are now). Anyway, they tested for these three causes and all were negative. Now, they had found a problem and in an episode of House, they would ingnore the fact that the standard tests were negative and move heaven and earth to find the underlying cause. But, this was the NHS, not House. I was discharged and the report back to my GP was that all tests were clear!

Should you be lucky enough to receive Incapacity Benefit and be called in for a review, what difference do you think the postive XMRV result will make? You could protest that despite the official view that you have an organic illness but the DWP 'Doctor' operates within the official guidelines and anyway only wants to know if you can touch your toes or boil a kettle!

As for insurance providers - well!! Who are they going to believe - you or the world renowned expert on CFS, and in whose interest would it be to believe you?

Sorry to be cynical but the world doesn't work like House and science is not impartial and doesn't always prevail.

Should XMRV be found to be THE cause, not complicated by other factors, reliably testable, fully proven without doubt and fully accepted by policy makers, and amenable to treatment that not only stops the virus but also stops the disease, THEN I would be persuaded to take the test. Not for my own personal validation, but because there would be material benefits.

The IP study trumpeted that there was no XMRV in the UK. This has been PROVED wrong. I think it is 7 out of 15 samples that have been positive so far which is a very reasonable, believable number.

I understand why those who are positive don't want to go put themselves forward, I can only applaud their candidness on the forums, but it will be good when there are enough to get this information out without personal risk.

XMRV is much more prevalent in PWC than controls. This means that either it is the root or it is a coinfection, either way it PROVES that there is something wrong with the bodies of PWC that is not caused by their thoughts. This is a massive finding which goes against everything that has been said in the UK for twenty years.

There may be no treatment, but it makes a difference. The US situation is not so dire so I can see why the specialists are saying to wait, but things have changed and there is no going back.

Mithriel

THANK YOU so much for this valiant effort, Levi, it's much appreciated. A big pat on the back to you.

BUT I must disagree with you about definite financial connections to individual CFS researchers.
Now... admittedly, I haven't done as much research as others on this board (and congrats to you all, working so hard between the bouts of cognitive dysfunction and weakness).
But I am led to believe that both Peter White and Trudy Chalder's financial connections and competing interests are openly declared and well documented.

I don't quite understand why Wessely gets singled out for particular vilification, because he appears to be coming round to the idea that a biological change is foundational to 'CFS'. White and Chalder still seem to me to be funamentalist somatoform believers. Just in the interests of fairness...

The other side of the argument is that Wessely keeps himself clean so he can be used as a foil for research that indeed has financial ties. That would be conspiracy theory territory...

Rachel xx

Wesseley says whatever will be good for him at the time. He is shameless in the way he says one thing one day, another the next.

PW is possibly more of a danger to us, but SW has the connections and is always plausible. He began the nonsense and is not to be underestimated. None of them are changing their views.

The "biological" talk is because he is trying to get more illnesses classed as psychological not the other way round.

It is not a conspiracy theory to believe that he always finds a way to distance himself. It is simple fact. The IP study is typical of the way he works.

Twenty five years of his involvement with ME has made life much much worse for us. He single handedly destroyed years of work into ME. He said he was going to get it wiped from medicine and he has succeeded, so all the expertise and knowledge from years of treating patients and researching ME has disappeared.

He uses chronic fatigue, tiredness and CFS interchangeably. He has always believed that there is a single continuum and that CFS is not a separate illness, not an illness at all.

The severely affected he ignores, all other symptoms he ignores.

Fairness, never mind compassion, respect or honesty is not something he has ever shown.

Mithriel

Fair do's, Mithriel - I'm a lot newer to this than many here, so am willing to be corrected. BUT having said that it is my personal belief that hate should be fought with love, injustice should be fought with inscrutable fairness, crime should be fought with law etc. Call me an idealist :Retro smile: ... am just waiting for somebody to be the Ghandi or Martin Luther King Jr of M.E.

I still think PW and TC should be the main targets here as it seems much easier to prove their links with the insurance industry, and when MPs attention is drawn to that and they can be discredited, SW will be much more of a lone voice.

Although I'm willing to bet that the psych lobby is a bit of a Hydra, and when you lop off one head, two others grow in its place.

Rachel xx

Simon Wessely works for the insurance company UNUM

Levi, thank you so much for trying!

I agree with the points you make.

I am fortunate enough (ha-ha) to have a sympathetic Consultant who saw me right from the off (classic viral onset) and has stuck with me ever since (13 yrs). With his help I have got IB and DLA and Ill health retirement. My third DLA award is open-ended! I pity those who have not been so lucky. I understand those who are desperate for validation by means of a positive XMRV test.

Have the WPI have gone public too soon?

They cannot be blamed if in retrospect this proves to be the case. At least they have given us some hope.

Some Phoenic Rising members have pointed out that the rise of the internet has introduced some democracy to the health - patient - doctor scenario. To an extent I agree. The Borgini blog is evidence of this. So was the rush by Imperial College to get out a negative XMRV study. It's smacks of desperation. I am reminded of Channel 4's Merlin; it might not be as good as analogy as House, but bear with me here. Queen Mab (Miranda Richardson) represents the old ways. Her powers are waning. Some people are standing up to her, fighting. And yet she is not done for. She seeks new allies. Merlin (Sam Neill) says "Turn your back on her. She will go away. Fight her now and she will gain strength. Ignore her and she will go away".

It is the classic argument - turn the other cheek or fight back. I wish I knew what the answer was. I do believe however that new way will win through in the end. Science will triumph eventually.I just wish like Merlin I had a magic ball that told me when.

You are an idealist.

Call me a realist :Retro wink:

A big thanks to you Levi for your time and effort.