Down With The Sickness

Briefly touching base here (and hoping I remember how to post!) to recommend a new blog begun by a friend.

Down With The Sickness

is Good Stuff, give her a visit!

Eye Movement Dysfunction in M.E. Patients

Interesting results from the trial I took part in last year.

Label-ism

Link being passed around on twitter to this article. It's all about how some people re-designed the  static 'disabled' symbol used in parking bays, etc, so that it looked like this instead:

The claim is made that it changes the perception of the disabled.

Indeed it does.  It changes it even further towards a perception that all 'proper' disabled are self-propelling potential athletes. Screw those lazy buggers who use powerchairs, eh? And those who don't use a wheelchair at all.

Frankly, there is already too much of the massively-misguided 'hey, how come you aren't all disabled Olympians?' around. We even, rather soul-crushingly, see some disabled people claiming to be 'the true disabled' as compared to the chronically ill. (Articles here and here  - the latter out today and literally breath-taking in its spite and stupidity.)

Wanted to like it, understand that it was very well meant, but can't.  Perhaps they could design another symbol to include those who cannot self-propel, and use both? Not only the self-propelled disabled are... well...disabled.

Any morning, 3a.m.

Me again, having the urge to write here again for the first time in a long while. It almost goes without saying that I'm angry and sad. Who wouldn't be, on a day where a UK Court of Law decides that discrimination against disabled adults can be legal?

Why did I stop writing in the first place? Partly because the blog went in the direction of trying to keep up with scientific state-of-play on M.E., only for me to discover I lacked the energy and cognitive ability to do that well - it was being done superbly by other people. Partly, I went through a long-ish relapse when energy was very low and linking to stuff I felt important/interesting via Facebook was simply much more ‘do-able’ than putting together blog posts. And partly, I needed to for a while stop submerging myself in news and information about my illness – it already dominated too much of my life, and I wanted the internet to be my portal to the outside world, somewhere I could put my thoughts and feelings and life before my chronic illness. Pretend, if you like, to be ‘normal’.

It’s good that I stopped. Not least because it spared people loooooong rants last year at Paralympic time.

And now that I’m writing again, this isn’t going to be an ‘M.E. Blog’ anymore. During the ‘quiet months’, a lot has changed. When I first wrote on here about deciding to start using a wheelchair (remember how excited I was????) my biggest fear when I went out was of being looked at with pity. It is now of being not only looked at but treated with hostility. Of being automatically labelled in many minds as a ‘scrounger/shirker/faker/thief’. Of being seen as a legitimate target for sneering, accusations and abuse. Things have changed that much, that fast. Until we have come to the point where forcing disabled people and carers from their homes is supported by law. Here, in the UK, in the twenty-first century. 

So fair warning, Wood of Thorns from now on is likely to be a lot about me being angry – and sad, and bewildered and sometimes despairing and sometimes riotously joyful . 

But today, it’s about fear.

I think we all have a ‘3a.m fear’, some persistent imagining that looms suffocatingly up in the dark insomniac hours when your defences are low. I’d like to share mine with you, so you know where I will be ‘writing from’:

In my 3a.m. imaginings, something has happened to Anthony, removing at one stroke husband, financial supporter and carer. In one stroke, I become utterly dependent on the benefits system for food, warmth, a roof over my head and the ability to travel further than the end of the street. The home I love is, of course, deemed more than I need (?deserve?) since it has more than one bedroom. So I lose it. I try to find homes for my beloved cats, often my only company day after day, because I cannot afford to feed or care for them properly. How empty my home and life is without them. Without a carer, my illness worsens, and it’s decided that since I need care, I must be placed in an institution – since that costs less than providing care in the home, with the added bonus of making me invisible. I refuse to go, so I’m sectioned. Forcibly removed from my home. And at 3a.am, when this happens? My neighbours do nothing. Because after all, the government knows best and the books must be balanced.

There isn’t a single day, however bright, that this fear doesn’t tag along with me like a second shadow. I used at least to be able to tell myself it was an unrealistic scenario, but today I...just can't.

And having said that, I ask you to bear in mind – I am one of the lucky ones. I’m one step away from the edge.  Too many people have already fallen over it, because no one will build even a tiny fence to stop it happening. 

Sitting in the Mud

This weekend I tried to go to a music festival for the first time since beginning to use the wheelchair. And this happened.




Friday:

Ground beginning to be muddy on arrival but navigable in the chair on arrival and departure.

Went to the Catton stage tent, and were helpfully shown to the disabled ‘safe area’ by a steward who was marking it out by spraying paint on the floor. Four or five of us in chairs, plus our carers who set up their chairs (trust me, if you had been pushing me around a muddy field all day, you too would need to sit down!).  For most of the afternoon/early evening the tent wasn’t packed and the safe area worked well, even though the lines on the ground were hard to see.

Then it was time for Chumabawumba followed by Oysterband - and everything became quite seriously unpleasant for the rest of the evening. People wanted to form a mosh pit, and to get closer to the stage with their chairs. “Can’t you move forward a bit?” was the most polite comment we got. The lines on the floor were totally impossible to see now - no barriers were erected - and not for the whole evening was any steward anywhere near us to see that the safe area was maintained. Nor was a clear path out of the tent created, so trips to the loo were nigh on impossible.

We ended up with the chairs only inches apart (which besides being rather unpleasantly claustrophobic I suspect breaches Health and Safety Guidelines) and we and our carers constantly fending off people who wanted to come into the safe area ‘because there’s a space’ or to go through it (walking on our possessions) rather than the few extra steps it would have taken them to walk round. Our requests to have the space respected were met with everything from martyred sighs and eye-rolling (you know, the ‘sheesh, better humour the bitchy loonies in wheelchairs’ kind?) to aggression and swearing. One highly pleasant individual even tried to climb over our chairs.  It was deeply shocking and very very intimidating.

Oh, and I have a newsflash for the people who behaved like this and then cheered when Wagner at the Opera was played.  Guess what other groups besides Jews were persecuted by the Nazis? Your fake social consciences are showing, you ignorant  hypocritical arseholes.

I’m not really sure how you go about explaining to someone who doesn’t understand why disabled people need a safe area why we do, but I’ll have a go.  Remember when you were little, and being in a crowd was like being surrounded by giant strangers who randomly bump into you and  buffet you with handbags, briefcases and the like, at head height?  Well imagine that...and now imagine your ankles are tied together. Congratulations, you are now in a wheelchair in a crowd. Think it’s much fun?

Saturday

Ground far muddier today, very hard for Anth to push me about the field in the chair.  By the time we leave, it’s almost impossible for him to do so, we have to detour a lot from the main areas, and fairly often pull the chair backwards rather than pushing.  Nothing has been put down on any part of the ground to make it more navigable - not sawdust, not carpet, not bark chips, not roll-out mesh.

Today people with wheelchairs don’t even try to set up in the Catton Tent ‘safe area’ - we just park quite near to one of the marquee doors. This is a lot pleasanter, and for most of the time, it’s possible to get the chair in and out of the tent.  It’s so hard to navigate outside that we just stay in here and listen to some great music. Oh, and I buy a very silly hat.

Then I make the mistake of trying to go for a wee.

By now, people have been allowed to set up chairs behind us, so getting the wheelchair out would involve asking two rows of people if they would mind disrupting themselves. Bearing in mind that, how very difficult getting the chair through the mud is, and the fact that the disabled portaloo (yes, there’s always ever only one - didn’t you know people stop having gender when they start to use a wheelchair?) is fairly close, I decide I’ll just try to make the short walk using my stick.

It’s not easy, my balance issues are bad enough when I’m not ploughing through mud, and I arrive just to see a young boy run into the one disabled loo and shut and lock the door. I’m very shaky now, and I lean on my stick and wait.  Five minutes pass, someone else comes along and tries the door.  “Occupied” I say.  “I’m going to just sit down on the floor to wait soon.”  Which sadly is true, but the queue for the ladies’ loos next to me seems to take it as ‘making a fuss’.

“You do know there are other toilets?” one woman ‘helpfully’ points out to me, indicating the normal portaloos, up their mud-covered set of steps. The ones that might as well be at the top of Scafell Pike, for me.

I point out to her that they are up steps, why does she think I am leaning on a walking stick?  She makes a sound rather like ‘tcha’ and turns her head.

Two other ladies very very kindly ask if I would like them to try to lift me up the steps, so that I can go to the loo before I wet myself.  I thank them, but say I don’t think it would be a good idea to try. I don’t add the reason - which is that them trying could easily cause me to wet myself - because I think that would have embarrassed them as well as me. It’s also not a good idea for untrained people to try lifting another person - in wet and muddy conditions the chance of such an attempt resulting in an injury to someone are fairly high, and I’m no lightweight.  I also don’t want to be manhandled by complete strangers, however blessedly kind they are (and those ladies  were).

“Well if you don’t want anyone to help you, stop making such a fuss!” snaps the 'nice' lady who pointed out the inaccessible loos to me  earlier.

The disabled loo remains occupied and locked.  I sit down on the floor in the mud, not just because my legs and arms are shaking too much to stand, but because I now am beginning to wet myself a little and it’s easier to disguise that sitting down than standing up. The entire queue looks embarrassed. Half of it also looks disgusted with me.

An adult woman arrives to tap on the door, asking if the occupant is ‘all right’.  I ask if she can get them to come out of the disabled toilet, as there is only one and the kid has been in there ten minutes.  I am glared at. “He is very sick, the medic sent him to go in there.”  “Well I’m sorry, but the medic shouldn’t have done that. This is for people who have limited mobility and cannot pee anywhere else. I’ve been waiting here ten minutes, I’ve had to sit on the floor, and I need them to come out or I will have to pee here in the mud.”

Looks of shock and disgust. It’s a sick child. How can I even ask such a thing? I repeat that I am sorry if anyone’s child is sick, but the only disabled loo is not an extension of the medic tent.

One of the medics arrives.  He too is absolutely disgusted with ‘my attitude’. Again I am told how very seriously ill this child is. Which to my mind begs the question - if so, why was the child sent unaccompanied to lock himself in any toilet, where he could have passed out and/or choked on his own vomit? Where no one checked up on him for ten minutes?

Eventually though, they do persuade the boy to unlock the door and come out.  I climb up my stick to standing - no, neither the medic nor the woman with the boy offered to help me - and I ask the medic why he sent someone to occupy the only disabled loo.  “Go and have this pee you apparently want so badly, and we’ll have this conversation when you come out love” he says. “We certainly will,” I say.  But when I come out again, he has vanished as has his patient and the woman (who was apparently ‘not his mother’).

(I cleared up the child’s vomit in there, by the way. Neither the medic nor the woman with the child had seemed to think they should offer to do so.)

Then I make my way back in tears to the Catton tent, and we decide to simply come home. I’m far too distressed to stay and watch Martin Simpson, who was one of the main reasons for buying tickets.  We speak to a steward on the way out of the tent, and he’s horrified - but can’t do anything.

I speak to one of the organising team at the main gate as we leave the site. Again, horrified but insistent there is nothing she can do. “What do you want me to do about it?” As a former professional event organiser, I make several suggestions:

“Ideally, have more than one disabled toilet.”  Too expensive.

“You could put a steward nearby to check the disabled loo is used properly”  No, she can’t, she hasn’t enough volunteers to ‘send one to just police the disabled toilet’.

“All right, I’ll volunteer. Give me a hi-vi and I’ll do the job” No, she can’t do that, we’ve paid for tickets.  (One of which apparently we needn’t have paid for, because it turns out in conversation with other disabled attendees that if you ring up and ask you can bring a carer free. But they don’t advertise that  anywhere, so unless you have telepathic powers, there’s no way to find out in advance).

“You could put an extra notice up on the toilet, asking your customers to please not use the disabled loo if they are not disabled, as you have had complaints.  You could also ask in the programme next time for people to be aware there are disabled attending and ask for some basic compassion and courtesy”.  She doesn’t seem to think this would help (and frankly, having experienced the behaviour of some people at this festival, neither do I).

“And you could tell the medics they must not do this again.  If they want a private area for people who need to vomit, tell them to bring a toilet tent.” If I can describe the medic in question, she says, she will do this. I describe as best I can someone I saw while distressed and sitting in the mud. Eventually, she agrees to go and have a word with all the medics.

Once again, I am subject to the ‘but the poor child’ argument.  “What about the child who was ill? Was he supposed to just vomit in the field?”  Well, no. Presumably he could have vomited into a bucket in the medic tent. Or - being about a quarter my weight - been carried to the normal loos.  I tell her I am sorry and feel for any child who is ill. BUT. A child needing to throw up does not alter one very basic fact:  if i want to pee at this festival, my choices are the disabled loo or the open air in the middle of the field. Which, I ask, would she prefer?  She looks mildly revolted. Yes, that is a nasty, disgusting choice to ask someone to make.

Isn’t it?

(Or perhaps I was just supposed to quietly piss myself? After all, what’s a disabled woman thinking, expecting any right to dignity, eh?)

Mentally Yours

Physical or mental? A perspective on chronic fatigue syndrome

is an excellent paper.  I found it helpful because it looks at why the 'mental or physical' diagnosis matters, as things stand today in the world of medicine, benefits, insurance and public perception.  I am someone who absolutely believes the mind and body are linked and affect one another. I accept that all chronic illnesses are likely to have - or to create - psychological problems in addition to physical ones. Yet I also object to my physical illness being misdiagnosed as purely a mental one.

The following struck me particularly:




"Many patients with CFS mention that they were under considerable stress at the time that they fell ill. But so are people who have heart attacks. The presence of stress leading up to a heart attack does not result in heart attacks bring classified as mental illnesses."




I think most people will know someone close-ish to them who has suffered a heart attack, and am moved to ask one simple question: how many of those people would be happy if after a stress-induced heart attack, their loved one were offered ONLY psychiatric treatment? 


How happy would you be?

'D' is for...near Despair

I have often thought that I would only take up writing here again if provoked by some hopeful development, or some great anger.  But today, I am too deeply sad to even be angry. And hope seems so distant as to be a joke.


In this week when I watched the beginning of the end of the NHS, in this year when government attacks on the disabled have bewildered and terrified sick people, some to the point of suicide, now comes the news that yet another severe ME sufferer, Emily Collingridge,  has died.  And as you will see from her last words, below, she died without any hope at all that our health services and government were working to find out why she was in constant pain, fed by tubes, unable some days to bear even the slightest contact with others.


This isn't a long post from me, because I want to pass on Emily's own words, as her family have asked people to.  And because, frankly, it's hard to have anything to say after you have read them.  Please read them. Please think about them.  If they make you unbearably sad, furiously angry...GOOD.  Hold onto that and pass her words on - to your MP, to friends, to the press, to anyone who says ME sufferers should improve their mental attitudes and take a bit of graded exercise...

Emily was thirty. She was...fucking...thirty. Here are the words she left us. Please read them. Then imagine this was your life, or the life of someone you loved. A life full of pain and a death without hope of cure. I hope it makes you cry.  I hope it makes you angry. Most of all, I hope it makes you act.

Emily’s Appeal

It has been said that the following is hard to read. But that is all we ask you to do: to read it, to forward/re-post it and to pledge your support for the many thousands of people like Emily who have to LIVE it.

“My name is Emily. I developed the neurological condition Myalgic Encephalomyelitis (ME) when I was 6 years old. In April 2011 I turned 30. I still have ME.

ME coloured every aspect of my childhood; it painfully restricted my teens and it completely destroyed my twenties. Now, as I move into the next decade of my life, I am more crippled than ever by this horrific disease.

My doctors tell me that I have been pushed to the greatest extremes of suffering that illness can ever push a person. I have come very close to dying on more than one occasion. If you met me you may well think I was about to die now – it’s like that every single day. After all these years I still struggle to understand how it’s possible to feel so ill so relentlessly.

My reaction to small exertions and sensory stimulation is extreme. Voices wafting up from downstairs, a brief doctor’s visit, a little light, all can leave me with surging pain, on the verge of vomiting, struggling with each breath and feeling I’ll go mad with the suffering. Of course it can also be as bad as this for no particular reason – and often is. I cannot be washed, cannot raise my head, cannot have company, cannot be lifted from bed, cannot look out of the window, cannot be touched, cannot watch television or listen to music – the list is long. ME has made my body an agonising prison.

My days and nights are filled with restless sleep interspersed with injections, needle changes (for a syringe driver), nappy changes (as well as experiencing transient paralysis and at times being blind and mute, I am doubly incontinent) and medicines/fluid being pumped into my stomach through a tube. My life could be better if I had a Hickman line (line which goes into a major vein and sits in the heart) for IV drugs and fluids, but such a thing would likely kill me. I’m on a huge cocktail of strong medications which help, yet still most days the suffering is incomprehensible. During the worst hours I may go without the extra morphine I need as I feel so ill that the thought of my mother coming near to administer it is intolerable – this despite pain levels so high that I hallucinate.

I live in constant fear of a crisis driving me into hospital; our hospitals have shown such lack of consideration for the special needs of patients like me that time spent in hospital is torture (eased only by the incredible kindness shown by some nurses and doctors) and invariably causes further deterioration.

Many days I feel utter despair.

But, unlike some sufferers, over the long years in which I’ve had severe ME (the illness began mildly and has taken a progressive course) I have at least had periods of respite from the absolute worst of it. During those periods I was still very ill, but it was possible to enjoy something of life. So in these dark days I know there is a real chance of better times ahead and that keeps me going.

My entire future, and the greatly improved health I so long for, however, currently hinges on luck alone. This is wrong. As I lie here, wishing and hoping and simply trying to survive, I (and the thousands like me – severe ME is not rare) should at least have the comfort of knowing that there are many, many well-funded scientists and doctors who are pulling out all the stops in the quest to find a treatment which may restore my health and that the NHS is doing all possible to care for me as I need to be cared for – but I don’t. This wretched, ugly disease is made all the more so through the scandalous lack of research into its most severe form and the lack of necessary, appropriate support for those suffering from it. This is something that must change.

And that is why I tell my story; why I fight my painfully debilitated body to type this out on a smartphone one difficult sentence at a time and to make my appeal to governments, funders, medical experts and others:

Please put an end to the abandonment of people with severe ME and give us all real reason to hope.”

Washington Post Ad pdf

And here's a pdf of the ad itself

Press release for Washington post ad

A big 'wow' to the MCWPA for bringing this off.

Chronic Fatigue Syndrome Patients Run First-ever Ad in The Washington Post

--Possible New HIV-like Retrovirus in Blood Supply--

CORAL GABLES, Fla., Dec. 6, 2010 /PRNewswire-USNewswire/ -- In an unprecedented move, chronic fatigue syndrome (CFS) patients published a half-page ad in The Washington Post today. The ad brings attention to new, HIV-like retroviruses, including XMRV, which have been linked to CFS and aggressive prostate cancer, and have been detected in healthy blood donors. The ad was created through the ME/CFS Worldwide Patient Alliance (MCWPA), a grassroots patient collaboration formed in August 2010 with the support of P.A.N.D.O.R.A., Inc. From their beds and wheelchairs, patients spent decades watching researchers, scientists and physicians debate about the cause or nature of their illness. Now, they are adding their voice through a campaign that calls for biomedical research funding, fast-track treatment options and improved patient quality of life.  CFS, also known as myalgic encephalomyelitis or ME/CFS, is a disabling, sometimes fatal NeuroEndocrineImmune disease that afflicts more than one million Americans and an estimated l7 million people worldwide.  

(Photo: http://photos.prnewswire.com/prnh/20101206/DC12334 )

ME/CFS first gained national attention amidst the AIDS epidemic in the early 1980s. As early as 1991, a retroviral link to ME/CFS was discovered by Dr. Elaine DeFreitas of the Wistar Institute, but subsequent retroviral research was halted by the government. Although more than 4,000 peer-reviewed articles in medical journals have pointed to system-wide immune, neurological, endocrine, gastro-intestinal and cardiac abnormalities, a biologically-based diagnostic definition has eluded doctors. The result has been a catastrophic lack of care, ineffective (sometimes harmful) treatments and a shorter life span for those who are ill. The leading causes of death among patients are heart disease, cancer and suicide. The disease occurs in people of all ages, from children to seniors, and also has a higher incidence rate in families and has occurred in cluster outbreaks.

"This can happen to anyone," said Sita G. Harrison, spokeswoman for the MCWPA. "ME/CFS is devastating and the lack of care has hurt us all. We ask the government and health care agencies that we put our trust in to help the millions of people who are suffering and to fund more research now."

A major scientific breakthrough occurred in October 2009 when the Whittemore Peterson Institute (WPI) at the University of Nevada, Reno, working with the National Cancer Institute and Cleveland Clinic, published the results of a landmark study. The seminal study, published in the leading scientific journal, Science, discovered the third human retrovirus, XMRV, in the blood of 67% of ME/CFS patients and in 3.7% of healthy controls. This suggests that up to 10 million US citizens could already be infected. This finding was later confirmed by the FDA, NIH and Harvard Medical School in a study published in the Proceedings of the National Academy of Sciences. Their results linked a family of human gamma retroviruses (to which XMRV belongs) to ME/CFS at a rate of 86.5% and 6.8% in the healthy population, bringing the total of Americans who may be infected up to 20 million people.  

"The NIAID, the national institute responsible for infectious disease research, has yet to fund XMRV research in ME/CFS or any other disease," explains Annette Whittemore, President of WPI. "WPI has had its last six XMRV-related grant proposals turned down; despite the fact that our researchers have proven XMRV is transmissible and infectious."

MCWPA is advocating for a budget that is in line with other NeuroEndocrineImmune diseases. Currently, only $5 million for ME/CFS research is in the NIH budget, far less than similar diseases such as multiple sclerosis ($l44 million) and lupus ($121 million).  Patients also ask for antiretroviral and Ampligen clinical trials that have shown great promise in mitigating the effects of ME/CFS.

For more information, to donate, or for more resources and spokespeople, including leading researchers, scientists, physicians, patients, and historians please visit http://mcwpa.org/ .

About MCWPA: Our mission is to create an effective, cutting-edge advertising campaign addressing the poor quality of life of individuals with ME/CFS. By issuing a collective and unified statement, our community will no longer be silent and invisible. The MCWPA ad campaign is supported by P.A.N.D.O.R.A. Inc.™, Vermont CFIDS Association, Inc., R.E.S.C.I.N.D., Rocky Mountain CFS/ME and FM Association and the Wisconsin ME/CFS Association, Inc.

CONTACT:  Sita Harrison/Tina Tidmore 561-313-1835 205-680-6890 Media@mcwpa.org

SOURCE MCWPA

DANCING WITH THE SANDMAN: So Near Yet So Far...

DANCING WITH THE SANDMAN: So Near Yet So Far...

A letter to my MP

[*Please note - the awesome SMC query letter that I attach to the bottom of this was put together by Chris Douglas of the Facebook group XMRV Press Releases .]

Dear Andrew

Please excuse this being an email rather than a 'proper' letter - there are a few web links in it, and I thought they would be easier to follow from an email!

I'm writing to you as my MP on one broad subject, and one narrow.  The broad is the general approach that is taken in this country (largely thanks to the former government) towards myalgic encephalomyelitis.  The narrow is concern over how the Science Media Centre set up by New Labour is filtering the science surrounding this illness to the national press, and possibly also our politicians.  (Myalgic encephalomyelitis, or ME for short,  is also sometimes called Chronic Fatigue Syndrome - which is rather like calling Alzheimer's 'Chronic Forgetfulness Syndrome', so I will stick with the term ME in my letter.)

You might have seen reports in the news yesterday from Dr Jill Belch's research team at Dundee University, ( http://www.bbc.co.uk/news/uk-scotland-tayside-central-11204884 ) who have found clear evidence of white blood cell abnormality in children with ME.  This is evidence that has previously found in adults with ME - a truth which in contrast to yesterday's mass news coverage has been barely whispered in our national press before now.

Please find below, a copy of a letter sent to the Science Media Centre's Board and Scientific Advisory Panel which seeks clarification of their press release about US research into a new human gammaretrovirus and its links with myalgic encephalomyelitis.  I think (hope!) it might interest you as my MP (I live in Whitwick and have suffered with ME for almost six years now).  You may not have heard of this research - in fact, I would be surprised if you had, since although it was very widely reported worldwide, it has barely seen the light of day here in the UK.

I hope that you will not mind me writing to you about this - I do feel guilty about adding to what I'm sure is already a huge workload.  I've actually been trying for a while to raise the nerve to write to you on the subject of ME, the exciting new research that is being done around the world (while the UK still throws money at talking therapies - for a condition recognised by WHO since 1959 as neurological), and the way it is handled in our country. This latest press release from the SMC finally pushed me into it, along with the announcement recently that anyone who has ever had ME/CFS will be banned for life from donating blood in the UK from 1st November this year, bringing the guidelines for ME sufferers into line with those for other relapsing remitting conditions like MS - and safeguarding our national blood supply at last from what may be a transferable illness. It really is time UK science and health stopped lagging behind the rest of the world. Didn't we once have the reputation for leading the world in the field of Science?

It frankly concerns me that MPs as well as journalists may make the SMC their first stop for information on the subject of ME, since the ME 'expert' there (Professor Simon Wessely - the man who claimed the Camelford poisoning was a mental disorder) is not a biologist, virologist or biochemist but a psychiatrist who firmly advocates the idea that ME is a mental disorder.  All information on ME and anything connected to it emanating from the SMC seems to reflect this, with the possibility of viral cause or connection routinely rubbished. (Professor W has yet to explain how white blood cell abnormalities such as those found by Dr Belch's team could be caused by a mental disorder or cured by Cognitive Behavioural Therapy - but I digress.) The SMC has yet to issue a single press report on the subject of XMRV (or any research indicating a viral connection to ME) that did not have a negative spin. 

This same bizarre view of ME as a mental disorder permeates the NHS and NICE Guidelines, and has led to children with ME being removed from their parents and sectioned in mental health institutions on the grounds that they were 'faking' and the parents were 'encouraging the child's abnormal illness beliefs'.  The parents' 'crime' being that they insisted their children were ill, not mad - and insisting that their children get help. Children with ME are labelled 'school refusers' and adults with it 'malingerers'.  It's almost impossible to find words to tell you how hurtful it feels to be on the receiving end of that. Before ME, I was an active, fully employed woman. I did voluntary work in my spare time, and only the year before I became ill completed a 100km trek in Iceland to raise funds for Macmillan Cancer Relief.  I now need a wheelchair for walks longer than ten minutes, cannot drive, and suffer real physical pain every day. And I'm lucky - about 25% of those who share my condition are completely bedbound. It is a mystery to me how anyone can say such a massive physical change in me is caused by me simply 'believing I am ill' or assert that psychotherapy could treat or cure my condition (I've tried it, since it was all the NHS could offer me - it helped not a jot).  Research from around the world has been building for years that there is a viral link (whether causal or not) to ME, and that ME sufferers show very physical symptoms like white blood cell abnormality. In short, it's clear that what we need is more serious biomedical research and less psychiatric hoodoo. Whatever you read in the press, my dream and that of everyone with this illness is not to live as invalids supported by others for the rest of our lives, but to have back enough of our 'old' lives to be useful members of society again. Research such as that done up in Dundee is a shining example of what is needed, not money wasted on talking therapies (which do no good) and Graded Exercise Therapy (which has been proven to make people sicker).

I'm struggling to keep pace with and understand a lot of the science around my illness - I would have struggled with it even at the top of my mental form, but these days I deal with cognitive (and of course, energy) problems too, courtesy of ME. It would really help to be less worried that our national press and MPs are being fed biased information (not least because the Press is often where I have to get my own information from).  It would be wonderful if as my MP you could take an interest in the subject. The All Party Parliamentary Group on ME has reformed after the election, and should be sitting soon - I'm sure they could provide you with lots of information; maybe you might even have the time to get involved?  

If you could help us obtain answers to the queries in the letter copied below, and perhaps keep your eye on how ME is being treated in general, I and about 250,000 people with ME here in the UK would be grateful. I'm very happy to try to find more information for you if you have questions on the subject (though I'm very much not a scientist!)

With best regards,

Jane Winter

Ref press release dated 23.8.10: Expert reaction to PNAS study on virus sequences found in blood of chronic fatigue syndrome patients

Dear xxxx
Please can you clarify the following points.


1. Why the press release title uses the term ‘virus’ (as per swine flu), does not state that the PNAS study discusses a ‘retrovirus’ (as per HIV) and does not explain the very significant difference between the two ?


2. Why Professor Weiss and Professor McClure do not qualify the statements below


“...the mouse retrovirus [i.e. the murine leukaemia viruses described in PNAS] is not the same as the one linked to CFS in a report published last year [i.e. XMRV as described in Science]…” Weiss


“They describe murine leukaemia virus (MLV)-related sequences that are genetically distinct from XMRV.” McClure


by explaining that:


(a) XMRV is, in fact, an MLV-like virus [1][2][12]


(b) the nomenclature ‘XMRV’ was created by Urisman et al to describe the MLV-like virus discovered in prostate cancer tissue [3]


(c) the ‘XMRV’ discovered in Myalgic Encephalomyelitis (ME) patients has known genetic differences to that discovered in prostate cancer (i.e. these are different variants of XMRV)


“Thus, the complete XMRV genomes in these CFS patients were >99% identical in sequence to those detected in patients with prostate cancer.” Lombardi et al, October 2009 [4]


“[F]ive years ago, a retrovirus resembling a murine leukemia virus (MLV) was found in patients with prostate cancer (1), and last year, a similar gammaretrovirus was identified in patients with chronic fatigue syndrome...” Courgnaud et al, August 2010 [5]


(d) subsequent presented but unpublished data (which one would expect the Professors to be aware of and mindful of when preparing a press release) have elucidated these differences, have been complemented (rather than contradicted) by the PNAS paper and may result in nomenclature amendments to avoid further confusion in scientific reporting of MLVs, MLV-like viruses and their respective variants.




3. Why neither Professor Weiss nor Professor McClure explain that the reason why the ‘ME XMRV’, specifically, may not have been identified in the PNAS study (nor in any other negative study) is that the original Science study (by Lombardi et al) has not yet been replicated ?


“However, in the study of Lombardi et al. (3) and studies reviewed subsequently by Silverman et al. (22) the evidence for XMRV infection in humans not only involved detection of viral nucleic acids using PCR, but also reported the detection of viral antigens, detection of anti-viral antibodies, the ability to culture the virus in a prostate cancer cell line, the detection of gamma retrovirus particles by electron microscopy, and transmission of infection to macaques. In sum, none of the four studies that have failed to confirm the PCR evidence reported by Lombardi et al. (3), nor our own study, has attempted to fully replicate that study.” Lo et al [1]




4. Why both Professors Weiss and McClure present criticisms of the PNAS paper but fail to discuss the significant positive outcomes of this work, such as the validation of Lombardi et al’s finding of a retroviral presence in ME ?


“Although we find evidence of a broader group of MLV-related viruses, rather than just XMRV, in patients with CFS and healthy blood donors, our results clearly support the central argument by Lombardi et al. (3) that MLV-related viruses are associated with CFS and are present in some blood donors.” Lo et al [1]


“This study supports a previous investigation[Lombardi et al. Science October 23, 2009 326: 585]that showed XMRV, a genetic variant of MLV-like viruses, to be present in the blood of people with CFS. The study demonstrates a strong association between a diagnosis of CFS and the presence of MLV-like virus gene sequences in the blood.” US Food and Drug Administration [2]


“In contrast to the study that first linked XMRV to CFS, the researchers found a more genetically diverse group of MLV-related viruses….However, these findings do support the earlier study's results.” US National Institutes of Health [6]




5. Why Professor Weiss criticises the PNAS paper for being “based on small numbers” (i.e. 37 samples and 44 controls) without referencing that the “reputable scientific groups” in the Netherlands and at the US CDC (which both failed to detect XMRV in ME patients) used similar numbers (32 samples/43 controls and 51 samples/56 controls respectively [7][8] ?




6. Why Professor Weiss states that he is “sceptical of the claim” [of “an association between a retrovirus of mice and human chronic fatigue syndrome”] but does not declare his own co-authorship of papers which seek to disprove human retroviral infection [9][10] nor state that Lo et al took extensive steps to ensure that they did not pursue a ‘rumour virus’, as described in one of these papers?


“Voisset and coauthors (20) recently reviewed the pitfalls encountered in the identification of new retroviruses (“rumor viruses”). False-positive results can occur for a variety of reasons. Viral gene sequence specific PCR primers can non specifically amplify nucleic acid sequences that differ from the target sequence. For this reason, we sequenced every positive PCR product (every amplicon of the predicted size) and confirmed MLV-related gene sequences in every instance.” [1]




7. Why Professor McClure’s involvement in a research study that failed to replicate the Science paper's methodology and, hence, its findings [11] was not considered to be a conflict of interest in reviewing the PNAS paper (and its bearing on the Science study’s findings), and why this potential conflict of interest was not declared in the press release ?




8. Why Professor Weiss does not specify that one of the “reputable science groups in the UK” was led by Professor McClure [11] ?




9. Why US scientists who have been involved directly with both the PNAS and Science papers were not invited either to contribute to this press release or given the opportunity to reply to its remarks ? Perhaps this would have facilitated a more balanced and constructive appraisal of the research which, in turn, may have encouraged a pro-active and sustained media interest in this unfolding science.




Citations


1 Lo et al, August 2010
http://www.pnas.org/content/early/2010/08/16/1006901107.full.pdf+html


2 FDA, August 2010
http://www.fda.gov/BiologicsBloodVaccines/SafetyAvailability/ucm223232.htm


3 Urisman et al, March 2006
http://www.plospathogens.org/article/info:doi%2F10.1371%2Fjournal.ppat.0020025


4 Lombardi et al, October 2009
http://www.sciencemag.org/cgi/content/abstract/1179052


5 Courgnaud et al, August 2010
http://www.pnas.org/content/early/2010/08/16/1007944107.full.pdf+html


6 NIH, August 2010
http://www.nih.gov/researchmatters/august2010/08302010chronicfatigue.htm


7 van Kuppeveld et al, February 2010
http://www.bmj.com/content/340/bmj.c1018.full


8 Switzer et al, July 2010
http://www.retrovirology.com/content/7/1/57


9 Griffiths et al, July 2002
http://jvi.asm.org/cgi/content/abstract/76/14/7094
Novel Endogenous Retrovirus in Rabbits Previously Reported as Human Retrovirus 5


10 Voisset et al, March 2008
http://mmbr.asm.org/cgi/content/abstract/72/1/157
Human RNA "Rumor" Viruses: the Search for Novel Human Retroviruses in Chronic Disease


“For many years, there have been sporadic reports of additional human retroviral infections, particularly in cancer and other chronic diseases. Unfortunately, many of these putative viruses remain unproven and controversial, and some retrovirologists have dismissed them as merely "human rumor viruses."”


11 Erlwein et al, January 2010
http://www.plosone.org/article/info:doi/10.1371/journal.pone.0008519
Failure to Detect the Novel Retrovirus XMRV in Chronic Fatigue Syndrome


12 CFIDS Association of America, August 2010
http://www.cfids.org/mlv/pictorial-essay.pdf




Further Information


The Whittemore Peterson Institute (WPI) press release to the PNAS paper
http://www.wpinstitute.org/news/docs/WPI_pressrel_082310.pdf


The WPI President’s statement about the PNAS paper
http://www.youtube.com/watch?v=ne7if7FKJFg


The WPI Research Director’s statement about the PNAS paper
http://www.youtube.com/watch?v=9ZEwQUg7o6I