David Tuller: New Virology Blog post (May 3rd)

[Maggie21]

The question with polls is whether voters have all the info they need to make an informed decision.
.

Totally agree which is why I have said (on the Crawley BRS2017 thread) in relation to Liplinks comment about an MEA poll to see who wants MEA to leave CMRC, that I am more than a little concerned that voters should be given a full background as to the reasons for the poll.

I wonder how it is decided who should be on and continue serving on the board of these things and more importantly the process for removing people? It smells a bit like gravy...making me suspicious about how this organisation is funded and who they are accountable to? It doesn't seem to be revolving around patient care.

From my point of view I don't think the MEA should leave the CMRC until they have made every effort to remove dysfunctional members who have proven time and time again to be a liability in terms of patient interests.

This is fairly fundamental...patient care and how the illness is portrayed to others within the medical field.

The other thought that occurred was that all the good work of the MEA will be undermined if there is no consistency of message across the members of the CMRC? If they can't all agree a common message between themselves...then what is the group for? Just seems to be a dysfunctional group that can't even agree on simple things like communication to colleagues. Where does the accountability lie for this?

I think this says to me as a relatively new observer that the whole organisation needs a new broom?

I don't really understand the mechanics of the CMRC so perhaps these questions are naive?

I think if every effort is made with still no success then MEA should leave and lobby for change on the outside.

I think doing nothing is not an option...otherwise the misinformation about patients will continue at the next orthopedic care conference or whatever.

rather than tell you what I think should happen, perhaps you can tell us what action the MEA proposes to take to stop this misinformation about patients being propagated? @charles shepherd

I broadly agree with this but how long are we prepared to let this abusive stance hold sway. I sincerely hope I can be proved wrong but I question whether EC and her supporters can be removed from the CMRC. They seem to have ignored anyone who doesn't agree with them for a very long time. Just how aggressive an action would it take to remove them? Patients have already been pressing for a lobbying for change from within for some time but as yet nothing has changed. Well not for the better anyway. Overall I think your point about MEA, and indeed other ME support charities, telling us what they are going to do about it NOW, is the only way to go.

And me.

I worry that if new researchers and drug companies are exposed to ME via Crawley they won't get an accurate picture of the illness or what would make good research projects.

Agreed, the longer it goes on the harder it is going to be to counteract. Which is why as in my comment above I think we as patients need to see some action NOW, not yet more words.

 

[dangermouse]

Totally agree which is why I have said (on the Crawley BRS2017 thread) in relation to Liplinks comment about an MEA poll to see who wants MEA to leave CMRC, that I am more than a little concerned that voters should be given a full background as to the reasons for the poll.





I broadly agree with this but how long are we prepared to let this abusive stance hold sway. I sincerely hope I can be proved wrong but I question whether EC and her supporters can be removed from the CMRC. They seem to have ignored anyone who doesn't agree with them for a very long time. Just how aggressive an action would it take to remove them? Patients have already been pressing for a lobbying for change from within for some time but as yet nothing has changed. Well not for the better anyway. Overall I think your point about MEA, and indeed other ME support charities, telling us what they are going to do about it NOW, is the only way to go.



Agreed, the longer it goes on the harder it is going to be to counteract. Which is why as in my comment above I think we as patients need to see some action NOW, not yet more words.

I agree. I am surprised and disappointed that nothing appears to have been done as yet. It's obvious (to me) that if anyone has the interests of pwME at heart they wouldn't have any association with EC or her ilk.

 

[Kati]

From twitter:

https://twitter.com/i/web/status/859935724820246528

https://twitter.com/i/web/status/860632289348157440

Thank you David and Dustin.

 

[Snowdrop]

The Saga continues:

http://www.virology.ws/2017/05/08/t...he-board-of-the-cfsme-research-collaborative/

I was thinking that depending on how things get moving/shake loose regarding PACE we might want to consider this at the end of 2017 for a submission here or elsewhere more applicable:

http://annenberg.usc.edu/journalism/selden-ring/eligibility-nominations

 

[Robert 1973]

As I/we have stated many times before, the MEA has no current intention of leaving our position as a charity representative on the Board of the CMRC

Belonging to a group such as this, which consists of a very wide spectrum of clinical and research opinion on both cause and management of ME/CFS, is obviously a very challenging and difficult task at times

But I/we believe it is far more important to be 'inside the tent' of an organisation such as this, especially when it has a considerable influence over the direction that research into ME/CFS is moving forward here in the UK

Please be mindful of the origin of the phrase you quote, Charles. Lyndon B Johnson decided against firing FBI director J Edgar Hoover because he concluded that it was "probably better to have him inside the tent pissing out than outside the tent pissing in."

I am not suggesting that you would necesssarily be able to achieve more outside the CMRC. But there is a strong suspicion that those who disagree with you (who appear to be the majority on the CMRC board) may prefer to have dissenting voices on the inside where they can be controlled/manipulated and censored.

 

[MEMum]

The Saga continues:

I was thinking that depending on how things get moving/shake loose regarding PACE we might want to consider this at the end of 2017 for a submission here or elsewhere more applicable:

http://annenberg.usc.edu/journalism/selden-ring/eligibility-nominations

Excellent idea

 

[Snowdrop]

Excellent idea

Just want to add that there are many worthy people in this community who have gone the distance in trying to get justice (in the form of proper funding, research and public education) but DT could have walked away any time with no harm to himself. He believed people when they told him the story from this side of the disease.

Llewellyn King certainly paved the way and I expect he has probably put energy into influencing people in the US capitol in ways no-one sees.

David Tuller's stature as a journalist and his relentless pursuit of the truth does merit the kind of award that is given to journalists in recognition of their work though.

 

[MEMum]

Please be mindful of origin of the phrase you quote, Charles. Lyndon B Johnson decided against firing FBI director J Edgar Hoover because he concluded that it was "probable better to have him inside the tent pissing out than outside the tent pissing in."

I am not suggesting that you would necesssarily be able to achieve more outside the CMRC. But there is a strong suspicion that those who disagree with you (who appear to be the majority on the CMRC board) may prefer to have dissenting voices on the inside where they can be controlled/manipulated and censored.

Just because they occasionally drop into the tent for meetings, does not mean that they are limited in their activities in the "real" world,outside the tent. There may be more supportive cynics in the tent than we realise.
If I were ever to find myself in the same Marquee as EC. I hope I could control myself enough to ask salient questions on the Errors in PACE, physiological abnormalities in exercise physiology etc.
I would not expect a rational answer.

 

[JayS]

As I/we have stated many times before, the MEA has no current intention of leaving our position as a charity representative on the Board of the CMRC

Belonging to a group such as this, which consists of a very wide spectrum of clinical and research opinion on both cause and management of ME/CFS, is obviously a very challenging and difficult task at times

But I/we believe it is far more important to be 'inside the tent' of an organisation such as this, especially when it has a considerable influence over the direction that research into ME/CFS is moving forward here in the UK

This means that I/we will agree with my colleagues on the CMRC Board at times

And I/we will disagree at other times

I/we apply exactly the same principle of being willing to sit down with people we may disagree with in relation to the work that we do on behalf of people with ME/CFS at the DWP (on benefits) and with NICE (on the 2007 NICE guideline) and elsewhere

In relation to the subject under discussion, I know and like David Tuller (I invited him to come down to stay with us in the Cotswolds in December last year) and I have been in contact with David over the past few days

I also wrote to Stephen Holgate and my colleagues on the Board of the CMRC yesterday to raise a number of concerns and objections about the presentation AND to make it clear that I/we fully support members of the patient community who have made constructive use of Freedom of Information Act to obtain unpublished data from the PACE trial.

Questioning the validity of the PACE trial data has nothing to do with either harassment or behaving in a vexatious manner

CS

Weak.

 

[MEMum]

Or just different.

 

[Yogi]

As I/we have stated many times before, the MEA has no current intention of leaving our position as a charity representative on the Board of the CMRC

Belonging to a group such as this, which consists of a very wide spectrum of clinical and research opinion on both cause and management of ME/CFS, is obviously a very challenging and difficult task at times

But I/we believe it is far more important to be 'inside the tent' of an organisation such as this, especially when it has a considerable influence over the direction that research into ME/CFS is moving forward here in the UK

This means that I/we will agree with my colleagues on the CMRC Board at times

And I/we will disagree at other times

I/we apply exactly the same principle of being willing to sit down with people we may disagree with in relation to the work that we do on behalf of people with ME/CFS at the DWP (on benefits) and with NICE (on the 2007 NICE guideline) and elsewhere

In relation to the subject under discussion, I know and like David Tuller (I invited him to come down to stay with us in the Cotswolds in December last year) and I have been in contact with David over the past few days

I also wrote to Stephen Holgate and my colleagues on the Board of the CMRC yesterday to raise a number of concerns and objections about the presentation AND to make it clear that I/we fully support members of the patient community who have made constructive use of Freedom of Information Act to obtain unpublished data from the PACE trial.

Questioning the validity of the PACE trial data has nothing to do with either harassment or behaving in a vexatious manner

CS

Is anyone else interested about what response @charles shepherd got from Stephen Holgate as there is just silence from the MEA?

Will this be shared with the ME community and MEA members or not?

 

[lilpink]

Is anyone else interested about what response @charles shepherd got from Stephen Holgate as there is just silence from the MEA?

In conversation with the MEA last Tuesday I was told CS would make a statement about the MEA and the CMRC 'later in the week'. The silence is deafening.

 

[Snowdrop]

I suspect he's having many conversations with a variety of people in order to make a statement -- he already knows a statement of continued support for CMRC is not going to go down well here.

Or maybe he is attending to other commitments, maybe he has a family crisis, maybe he's on vacation. . . there are other possibilities.

If he waits a week or two to make a statement I'm not sure it has all that much tangible difference to the situation.

 

[BurnA]

If he waits a week or two to make a statement I'm not sure it has all that much tangible difference to the situation.

I'd like to think the MEA are carefully wording their CMRCexit statement, but time will tell.

 

[lilpink]

I'd like to think the MEA are carefully wording their CMRCexit statement, but time will tell.

Yes. It needs to be rather more bullish than the MERUK one. IMO...

 

[Barry53]

Is anyone else interested about what response @charles shepherd got from Stephen Holgate as there is just silence from the MEA?

Maybe it is a long pause for thought ...

 

[Wolfiness]

But I/we believe it is far more important to be 'inside the tent' of an organisation such as this, especially when it has a considerable influence over the direction that research into ME/CFS is moving forward here in the UK

How much of that "considerable influence" comes from the CMRC being able to say you are on their side?

And how much influence do the charities actually have? Have you ever got SH or EC to change anything of substance?

 

[Jo Best]

What is the point of expending time, money, energy, on chipping away at the CMRC until it looks better for patients, when there is a highly successful international Invest in ME Research Biomedical Research Collaborative?

 

[Snowdrop]

What is the point of expending time, money, energy, on chipping away at the CMRC until it looks better for patients, when there is a highly successful international Invest in ME Research Biomedical Research Collaborative?

For me the issue isn't one of chipping away at until it looks better but of demolishing it so that the harm stops.

 

[Yogi]

Is anyone else interested about what response @charles shepherd got from Stephen Holgate as there is just silence from the MEA?

Will this be shared with the ME community and MEA members or not?

I am reposting this as @charles shepherd of MEA is online and still has not provided a response about the letter sent to Holgate and what response was received. Thank you. MEA members and the ME community are being ignored and deserve to hear a response.