Angela Kennedy
Senior Member
- Messages
- 1,026
- Location
- Essex, UK
Excellent points JAS.
-
Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
To become a member, simply click the Register button at the top right.
XMRV testing in the UK: statement from The ME Association
- Thread starter fred
- Start date
Excellent points JAS.
- Messages
- 76
JAS said:
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
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.
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
- Messages
- 3,061
- Location
- UK
Dr Charles Shepherd is a trustee/director of the ME Association. As such, he cannot be paid for his role as Medical Adviser.
Adam
Senior Member
- Messages
- 495
- Location
- Sheffield UK
Originally Posted by JAS
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:
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:
- Messages
- 76
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".
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".
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.
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.
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 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.
Countrygirl
Senior Member
- Messages
- 5,468
- Location
- UK
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.
- Messages
- 76
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
Senior Member
- Messages
- 495
- Location
- Sheffield UK
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.
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.