XMRV testing in the UK: statement from The ME Association

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This is what disturbs me with their thinking:

"The MEA believes that a small but important part of further research into a possible link between XMRV and ME/CFS is to retest anyone who has sent blood to the US. This process would involve retesting at one of the retroviriology laboratories here in the UK that has been unable to find any evidence of XMRV in the blood samples they have analysed so far. We know that the UK research groups would be willing to do this retesting but this research can only move forward if people are willing to volunteer. The MEA Ramsay Research Fund is willing to assist with the funding of this research."

Why does he want to put XMRV +ve through testing in this proposed UK Ramsey trial when the UK scientist presumeably he will be using have been "unable to find any evidence of XMRV in blood samples they have analysed so far" bearing in mind Annette Whittemore's letter. Where is the integrity? If the UK Scientists really do want to find the truth of XMRV surely it is far more important to work WITH the WPI as opposed to against them to see why their testing is not producing the same results....not just carry on testing positive bloods..he can get those samples from the WPI but he just has to ask for them which they would do if they were being rational. Why would anyone who is XMRV +ve put themselves in the position of being 'used' by the UK scientists. I firmly believe that the best way that XMRV +ve people in the UK can help to get to the truth of XMRV and help other sufferers with ME/CFS in the UK is NOT to donate blood towards this, if the UK scientists do not have UK positive blood they cannot do the science and therefore will not be part of the whole XMRV story. If they do seriously want to be part of the XMRV story then they will have to work with the WPI....and they would do this if they were seriously trying to ascertain why their testing isn't working.
Excellent points JAS.
 
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JAS said:
Why does he want to put XMRV +ve through testing in this proposed UK Ramsey trial when the UK scientist presumeably he will be using have been "unable to find any evidence of XMRV in blood samples they have analysed so far" bearing in mind Annette Whittemore's letter. Where is the integrity?
I emailed the MEA yesterday, copy below:

Title : With regards to the MEA's xmrv Update

"Given the recent letter from WPI to Dr McClure i would not, (theoretically speaking i hasten to add if i was xmrv positive), now trust my blood to be tested by one of the two retrovirology labs connected with the negative uk XMRV studies.

Has the MEA thought about maybe offering an independant laboratory solution to help overcome this barrier of distrust?"


As yet no reply :(
 

ukxmrv

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The MEA will also be influenced by patients who don't want XMRV to be the cause or a major player in ME. This may include old fashioned ME doctors (not many of those left) who still think that entroviri were the main culprit.

There are ME patients in my local support group who have a CFS diagnosis but have idiopathic chronic fatigue. They are not severely affected and some of them are making progress using lifestyle adjustments or simple theories from the past. These people do not want XMRV to be taken seriously. My feeling is that this group is energetic and vocal.
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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I dont think he gets paid to advise the MEA either so probably hasnt been pushed too hard to give this entire piece a much needed revision.

Dr Charles Shepherd is a trustee/director of the ME Association. As such, he cannot be paid for his role as Medical Adviser.
 

Adam

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Originally Posted by JAS
Why does he want to put XMRV +ve through testing in this proposed UK Ramsey trial when the UK scientist presumeably he will be using have been "unable to find any evidence of XMRV in blood samples they have analysed so far" bearing in mind Annette Whittemore's letter. Where is the integrity?
This is my concern also.
I agree.

If I test positive through WPI coordinated UK study, for XMRV I will not subsequently take part in any MEA sponsored study unless there is a cast iron guarantee that they are using validated methods, and that Peter White has no involvement, and that Myra McClure does not go within a million miles of the lab, and that no British Government agencies have any input at all, and then, if and only if, Simon Wesselly personally apologises to every single XMRV + in the world, in writing, and agrees to turn all the CBT Camps, I mean centres, into in-patient wards for XAND sufferers...

AND

gives up his skiing jaunts every year, to work voluntary in said XAND wards...as an orderly...emptying bed pans.

Then I'm in.:tear:
 
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Just to confirm - i havent any intention of giving the MEA my blood, i was primarily letting them know how unworkable their suggestions are in reality. If it wasnt for sufferers like me continually asking them why are they not doing much about XMRV i honestly dont think they would be bothered to do anything at all...and that in itself makes me distrustful of them.

I think i am seeing Charles Shepherd's statement for the MEA more as "we arent really gonna pay out a penny for XMRV research, but here is some speil that at first glance makes it look like we are positively trying".
 

garcia

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Cookie Monster, had an issue with your earlier posts, but love your later posts. Good on you for coming around.

We need to wise up as a patient population. There are people out there who represent our interests and we need to show our loyalty to them and back them to the hilt, just like they are backing us (WPI).

Then there are other people out there who have government salaries, and really don't give two hoots about us. We are really more trouble to them than we are worth. They don't reply to our emails. They decline face to face meetings. They hide behind bureaucracy and procedure. They claim to have patient safety in mind but really they quash our ambitions at every turn. Their only interest is to maintain the status quo. They hate new ideas, because new ideas are dangerous. New ideas challenge existing power structures. The same power structures that pay their salaries.

Who are these people? They go by many different names. The GMC. Charles Shepherd. Myra McClure. Whatever name they choose, the modus operandi is the same.
 
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Dr Shepherd has ME himself and does a hell of allot of work on behalf of the ME community on a voluntary bases. I can't believe anyone on here is knocking him for trying to organise for people based in the UK who have been diagnosed with XMRV already to be retested?
I have been in email communication with Dr Shepherd recently and he said the idea of this if to show that there is a problem with the UK testing so far and to prove this! He appears to be as frustrated with the situation as any of us and is trying to progress research.
 

coxy

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i agree Bananaman. The MEA have been a great help to me and my family over the years, i've had personal emails back from Dr Shepherd on a few occasions, asnd their help line is great. Please be careful who you start to knock without proof!
 

Countrygirl

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bananaman;71290]Dr Shepherd has ME himself and does a hell of allot of work on behalf of the ME community on a voluntary bases. I can't believe anyone on here is knocking him for trying to organise for people based in the UK who have been diagnosed with XMRV already to be retested?
I have been in email communication with Dr Shepherd recently and he said the idea of this if to show that there is a problem with the UK testing so far and to prove this! He appears to be as frustrated with the situation as any of us and is trying to progress research
I first became involved with the ME Association in 1986 and, in my opinion, they have accomplished an enormous amount over the years considering the very difficult circumstances that surround this disease. Many volunteers, who are ill themselves, including Charles, have given unstintingly of their time and limited energies. Please will folk bear this in mind.
 
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I do still feel that the MEA could have easily helped this current situation by donating some of the Ramsey funds to the WPI for their UK Study in the same way as Invest in ME have gotten involved. There is a considerable shortfall that the WPI are having to pick up and they have limited resources with which to accomplish all of their goals.
 

Adam

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MEA statement

I saw Dr. Sheppard a few years back give a talk. He's a very nice man. I don't doubt his integrity. However, given the unholy shenaninigans that have ensued since WPI Science paper, I don't think it is being overly critical to suggest his tone his negative - his pronouncement puzzling. The VIPdx XMRV test has received at least a limited validation through the NIH/NCI whereas the UK studies testing methods have not received any such validation. Another UK debacle would set us back years.

It might be rational not to overstate the case for XMRV in CFS/ME at present. On the other hand, take for instance the businessman who sees his company going to the wall unless he does something fast. He does not have the time to weigh up every last course of action before acting, even though it is rational to consider every angle before acting.

I think we face a similar situation.

XMRV is a big noise in a tiny place. Try the BBC site for instance. Three stories last I looked. Science paper - ICL paper - Canadian Blood donor ban. Barely a whisper. And people wonder why Judy M got involved in the politics. Sometimes our advocates need to go out on a limb. They need to make some noise instead of umming and arring and belatedly issuing a very sober statement. Which is, IMO, playing into the hands of the You do not have a virus, oh well, you might have a virus but it doesnt matter anyway because we arent going to treat you any different anyway brigade.

That's what we are up against. No one in the NHS or the Government is going to take a blind bit of notice of the MEA if this latest statement is anything to go by.

BTW - I did not know Dr. Sheppard had ME/CFS. As a fellow sufferer I wish him all the best.