The Fight is on...Imperial College XMRV Study

[Marco]

It is the classic argument - turn the other cheek or fight back..

I'm certainly not advocating turning the other cheek. But it helps to know what victory will look like and then what steps are needed to get there. Victory in our case is a universally recognised biological cause and treatment allowing us all to be treated fairly and with dignity.

It just seems a little early to me to claim that anything has changed apart from the understandable hope and excitement the XMRV findings have raised.

 

[thefreeprisoner]

Just wanted to make it clear: I'm not advocating turning the other cheek in the sense of 'just suck it up'. (There is some evidence that when Jesus told his followers to 'turn the other cheek' it was actually quite a clever, cheeky insult to a Roman soldier - albeit clearly pacifist.)

Subversion? Yes.
Ridicule? Yes. (Hence my sig.)
Reasoned scientific arguments? Yes.

Postings based on rumours with no clearly linked evidence to back them up? No. (although I may be guilty of this, eek)
Personal attacks? No.
Threats of physical violence or murder? No, please, no for the love of God!! Anybody who is doing this is damaging our cause.

Rachel xx

 

[Adam]

I'm certainly not advocating turning the other cheek. But it helps to know what victory will look like and then what steps are needed to get there.

In the UK even sidelining the Pscho lobby will be a victory. Next would be testing. Not just for XMRV but symptom identification which would allow a treament regimen specefic to each patient. Maybe you are right about not turning the other cheek, but the problem as I see it is we are uncoordinated. We need a champion (outside of the WPI) who can get the right kind of publicity. Some of our advocates are perhaps a little too apolgetic. Charles Sheppard is a nice, sincere man, but perhaps does not have the grit to stand up to NICE etc. Pity there isn't some high profile celebrity (sorry wouldn't wish this illness or anybody) with ME/CFS who could give our condition a makeover and make Joe Public see what we are going through

 

[ukxmrv]

Rachel,

Do you have any proof that anyone is threatening violence or murder?

Under what circumstances and by whom?

Would be interesting to know. It may be that by spreading these rumours (and then getting patient to repeat them with no proof on these forums) someone is trying to undermine things or manipulate patients.

 

[Mithriel]

I get annoyed when people go on about hate mail and jihads and death threats and use them to blacken our entire community. Despite the intense helplessness and frustration, let alone anger, we feel, as a community we are remarkably restrained.

I think at lot of this "hate mail" is exaggerated to get at us, but even if it isn't we know that a Muslim suicide bomber doesn't make all Muslims terrorists and that IRA bombs didn't make all the Irish killers. Yet they use this to make out we are all neurotic and psychologically imbalanced.

No one has ever been physically injured by someone with CFS but even if they were it would make no difference to the science or the truth.

Marco, in forty years of illness and reading the research, the XMRV work is different from anything that has come before. Do not underestimate what it means.

Mithriel

 

[ukxmrv]

It concerns me that the psych lobby can bleat about alleged threats against them and at the same time not acknowledge that actual violence, real physical abuse is going on everyday against PWCFS and ME.

In the current UK trial of a Mother of a PWCFS patient who died it came out in court that she was sexually abused by a medical professional. I've heard of this type of abuse more than once from PWME. I've also been involved with cases of PWME who are forcibly locked in Psychiatric Hospitals, drugged without their permission and physically assaulted. Many people who have been or have felt assaulted and under physical threat in hospitals. I've met PWME who feared for their lives. Real PWME are dying of early cancers and heart problems.

I was physically assaulted in a NHS hospital.

We need some balance here when discussing physical threats and also an acknowledgment of the real violence being perpetrated against people with this disease in the UK. After all it is PWME who are facing real threats and real abuse.

 

[Marco]

"Marco, in forty years of illness and reading the research, the XMRV work is different from anything that has come before. Do not underestimate what it means."

Hi Mithriel

I'm not underestimating the potential importance of the XMRV finding, just not intending to underestimate the depth of inertia and entrenched interests involved.

Adam is absoultely right. We can discuss and debate amongst ourselves but we need to engage someone with some 'clout' to get through to the policy makers.

 

[Knackered]

I've also been involved with cases of PWME who are forcibly locked in Psychiatric Hospitals, drugged without their permission and physically assaulted.

How do people end up in psychiatric hospitals? I thought you had to be a danger to others for that to happen?

When I was younger a man with skitzophrenia moved in to a house near where I lived, he was quite clearly mentally disturbed, I spoke to him on occasions and he was quite out there, yet he was left out in the community so I don't understand how adults with ME get forcibly locked in psychiatric hospitals.

I'm not doubting it, I just don't understand.

 

[flex]

I am getting really fed up with all this "infighting" and blaming and calling for a hero to come forward. Its not going to happen. This is our movement and we need to take control of it. Everybody on here wants action. My draft letter to take on the whole psyche lobby through the media and every other channel is now online on this site on its own thread. A few people have offered to help but NOBODY has!! I have made repeated requests for help but am doing this completely on my own whilst reading over and over again that we should do X, Y and Z.

Everyone has ideas of what should be done but nobody follows through. Read the letter offer any help you can and lets get it finalised and sent of. XMRV is not going to stop the spin and corruption. WE ARE!!!!

STOP TELLING EACH OTHER WHAT WE ALREADY KNOW!!! TELL THE MEDIA AND CHALLENGE THE CORRUPTION HEAD ON!!!!


IM REALLY SICK AND TIRED OF THIS!!!

LETS ALL FINALISE THE LETTER AND SEND OF THOUSANDS OF COPIES AS ONE UNITED FRONT!!

PLEASE PLEASE PLEASE JOIN ME IN THIS

MY DEAR FELLOW SUFFERERS

FLEX.

 

[Knackered]

I am getting really fed up with all this "infighting" and blaming and calling for a hero to come forward. Its not going to happen. This is our movement and we need to take control of it. Everybody on here wants action. My draft letter to take on the whole psyche lobby through the media and every other channel is now online on this site on its own thread. A few people have offered to help but NOBODY has!! I have made repeated requests for help but am doing this completely on my own whilst reading over and over again that we should do X, Y and Z..

I replied to your thread this morning, I'll print letters out and get them posted, even if it means spending 20 on stamps.

If I can do anything else to help I will. What else do you want help with? I'm not great lately but I'll do the best I can.

 

[ukxmrv]

I'm glad that you asked Knackered.

I've met a variety of people who have been committed over the years.

One woman was committed after trying a treatment protocol by a NHS doctor which involved large quantities of sedative and psych drugs. She had such a bad reaction that she was committed to a Psych hospital. Then very badly treated there.

Another after her physical condition deteriorated after CBT and GET. She was committed to a hospital and told the usual story about ME not existing and all her problems being in her mind.

Another was committed as he had POTs and was drinking too much water (in the opinion of his doctor).

Another woman was committed due to trying an antibiotic regime which her doctor declared was dangerous.

Children at Great Ormond St hospital were held in locked psychiatric wards.

I've met so many people over the years and been involved in so many cases. There are so many of these I'm surprised that you don't know. Are you new to ME?

Surely you must know about Sophia Mirza

http://www.sophiaandme.org.uk/

 

[Knackered]

There are so many of these I'm surprised that you don't know. Are you new to ME?

I've had it six years. When I first became ill I was hospitalised with a virus, I never got better so I went to the doctors a lot wondering what was wrong. The first doctor said I had anxiety, I know what anxiety feels like so I saw another doctor, he told me I had post viral fatigue and said with steady exercise I'd get better, I never did, after a while I was diagnosed with CFS.

Nowadays my symptoms match the Canadian Criteria by ~95%, I have ME. I don't bother with doctors much anymore, I only go when I need to. I know there aren't any treatments so what's the point? I'll wait until something comes along.

Edit:
I suppose it'd be best not doing anything that'd get you thrown in to a psychiatric hospital if you have ME. Maybe they're admitted because they're always at the doctors trying to seek treatment? I've never had a problem, but that's mainly because I know there's nothing the doctor can give me.

 

[ukxmrv]

Agree Knackered, I don't tend to see NHS doctors as there is no point. The assault also put me off. I'm sure that the doctors who complain about threats in the UK would not like that done to them but we live in the real world where bad things can happen and more importantly do happen.

Really sorry to hear that you have been ill for 6 years. That's far too long. For treatments I either see private doctors when I can (infrequent) or try I look on the INTERNET, find similar patients and then try things that work for them.

Back to the discussion on violence. I'd like to see the debate over how PW ME and CFS act balanced with an acknowledgment that real violence and abuse is happening in the UK to patients.

 

[Marco]

I am getting really fed up with all this "infighting" and blaming and calling for a hero to come forward. Its not going to happen. This is our movement and we need to take control of it. Everybody on here wants action. My draft letter to take on the whole psyche lobby through the media and every other channel is now online on this site on its own thread. A few people have offered to help but NOBODY has!! I have made repeated requests for help but am doing this completely on my own whilst reading over and over again that we should do X, Y and Z.

Everyone has ideas of what should be done but nobody follows through. Read the letter offer any help you can and lets get it finalised and sent of. XMRV is not going to stop the spin and corruption. WE ARE!!!!

STOP TELLING EACH OTHER WHAT WE ALREADY KNOW!!! TELL THE MEDIA AND CHALLENGE THE CORRUPTION HEAD ON!!!!


IM REALLY SICK AND TIRED OF THIS!!!

LETS ALL FINALISE THE LETTER AND SEND OF THOUSANDS OF COPIES AS ONE UNITED FRONT!!

PLEASE PLEASE PLEASE JOIN ME IN THIS

MY DEAR FELLOW SUFFERERS

FLEX.

OK Flex

What is the best way to go about this? The reason we need 'heroes" is because the powers that be don't care about us and certainly don't listen to us as individuals.

MP's, elected representatives can exert a certain amount of influence, as can 'celebs' on public opinion and the media have enormous potential to influence politicians through the scandal/embarassment factor. But sending a letter, as an individual, isn't going to persude these people. A letter representing a group, or a petition has more chance. How many members do we have on this forum who would add their name to a letter - I certainly will.

As for the letter, I appreciate that its a work in progress. My major concern is how productive/counter-productive it is to appear to have a vendetta against one individual, no matter how destructive his role may have been. It would also be useful to talk up the XMRV risk to the general population. Much more effective when any individual feels iincluded in the at-risk group.

Finally, much as I hate to suggest capitalising on the tragedy of the Gilderdale's, it is a current headline story and someone has to explain how this poor woman was denied treatment for 17 years and how CBT and GET could help someone unable to eat, drink and bedbound.

 

[Esther12]

I spoke to someone who was commited by their psychologist wife.

I've never had any direct problems with psycholgists (the psychologists I've been sent to seemed sure I'm physically ill), but I know a lot of people have.

 

[flex]

Marco,

Heros are not coming forward of their own volition. My letter is about bringing the issue into the public arena. We could go on and on for the next twenty years about what should or should not be in the letter. However I do appreciate your suggestions. I do need editing help.

Please read the whole letter. It makes demands of the whole psych lobby. It asks why ME issues are under lock and key for another 61 years. It demands more biomedical funding. It raises concerns about the insurance industry. It highlights the blood safety issue. It demands that the whole of the medical profession under go retraining on ME. Its putting the truth out and putting the ball in the court of official bodies at the same time as asking the press to scrutinise such bodies. It talks about the safety concerns of GET.

If you read the thread posts you will see that it IS a campaign petition and not an individual letter.This is open to MPs, doctors, celebs and scientists to take part in.
http://forums.aboutmecfs.org/showthread.php?2516-Wessely-suspension-draft-letter-is-here!!!!!!!!!!
WE HAVE TO HAVE A PLAN TO REACH THEM FIRST!! My belief is they are out there, many have raised concerns but I feel they dont want to strike first or put their head way out in front. Thousands of us all saying it at the same time will take the burden of one person.

At the end of the day it is Wessely and his school who are the major players in this deceit. A personal vendetta is a strange phrase to use. Whom and what should I have taken issue with if not Wessely.


Many thanks for your honesty,

Flex

 

[Advocate]

In the current UK trial of a Mother of a PWCFS patient who died it came out in court that she was sexually abused by a medical professional.

ukxmrv, is that in a transcript?

I was physically assaulted in a NHS hospital.

Good grief!

We need some balance here when discussing physical threats and also an acknowledgment of the real violence being perpetrated against people with this disease in the UK. After all it is PWME who are facing real threats and real abuse.

Balance. That's a good word to use in letters to the editor.

 

[Mithriel]

The documents in the Sophia Mirza case contain a very chilling judgment from the General Medical Council - the UK body which allows doctors to practice.

They said that Sophia, as with anyone, was totally free to refuse treatment, in this case hospitalization for CBT and GET. However her decision to refuse that treatment was so "perverse" (their word) that that decdision in itself was enough to show she was not competent to make her own decisions and so was all the evidence needed to section her - forced against her will into a mental hospital.

So there you go, we can refuse CBT or GET but that refusal can be taken as proof we are mentally incompetent.

Mithriel

 

[Martlet]

Agree Knackered, I don't tend to see NHS doctors as there is no point. The assault also put me off. I'm sure that the doctors who complain about threats in the UK would not like that done to them but we live in the real world where bad things can happen and more importantly do happen.

I seldom see mine. At first it was once a month, but now it is for an annual physical and then for other issues that might arise. I think if I was always there, my doctor would get pretty fed-up with me.

As for someone being admitted to a psychiatric ward for drinking too much water, I find that weird. I have always drunk a lot but after major surgery back in the Eighties, I was so thirsty that I was up to about ten pints of water a day. A friend commented on it, so I called my doctor - this was in the UK - who did a blood test for post-operative diabetes and when that came back negative, said that it was nothing to worry about and that it would pass. I soon settled back to my normal roughly six or seven pints of fluids a day. On the other hand, there is a psychiatric condition called Psychogenic polydipsia and people with this can seriously harm - even kill themselves - through water intoxication. Perhaps this person was a real danger to themselves?

 

[thefreeprisoner]

Marco - it's a myth that petitions have more power than a letter from one person.
MPs take much more notice of a hand-written or typed/printed letter from one person, that's really personal with their own story, or a surgery visit, than they do of a petition.
Especially if they get more than one of the same type of hand-written letter or request for a surgery.

Thank you Flex for all the hard work you have been doing.

I think we need to remember that everybody on this forum is very sick. We've got to encourage each other positively. Making people feel guilty because they are too tired or demotivated or in pain or not thinking straight enough to help the cause may turn people off.

Regarding threats of violence, I've seen people on this very forum - on more than one occasion - joking about the physical violence they would like to inflict on psychiatrists. I waggled a finger at the time when I saw it happening but didn't have the motivation to trawl through the whole boards. PM me for one - not particularly good - example.

I'm well aware of the torture and abuse that has been inflicted on M.E. patients but learn more about it every day so thanks Mithriel for adding to the advocacy arsenal. The more it gets pointed out, the better, as far as I'm concerned.

My hesitation is about how we respond to that. It seems to me from history that the best way to change the course of events is to respond differently to the person inflicting violence.
The people who changed the world using violence and hatred tended to change it for the worse as far as I can see.

Rachel xx