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

[Kati]

She was slagging us off behind our backs behind closed doors and got caught out. Who knows how many other presentations there have been or how regularly she does / has done this. Ditto for her colleagues.

Just goes to show that nothing that has been said in the last couple of years since non-sufferers started taking an interest, including journalists and top academics, has made a blind bit of difference to them. They haven't conceded one point in two years, or had any meaningful engagement with anyone outside their bubble. Head in the sand, keep going, business as usual. If that isn't anti-science, I don't know what is.

The refusal to attend international [ME] conferences, including the one on their own turf at the end of the month (Invest in ME) is quite telling too.

 

[TiredSam]

Doesn't CMRC stand for The UK CFS/ME Research Collaborative? As in collaborate? Miriam Webster's dictionary defines collaborate as follows:

to work jointly with others or together especially in an intellectual endeavor An international team of scientists collaborated on the study.

Can someone please explain that definition to the deputy chair? I think it's the definition everyone else assumed was intended. Unfortunately EC seems to be working to an entirely different definition of the word:

to cooperate with or willingly assist an enemy of one's country and especially an occupying force suspected of collaborating with the enemy

Another word hijacked and redefined by the BPS brigade. Looking at the executive committee members, the charity members and observers (Ed Sykes from the SMC anyone?) the project seems to be riddled with collaborators.

 

[Jo Best]

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

Would you be willing to elaborate on what direction research into ME/CFS is moving forward in UK, and how this has been influenced by the CMRC?

 

[Jo Best]

The refusal to attend international [ME] conferences, including the one on their own turf at the end of the month (Invest in ME) is quite telling too.

Members of the CMRC regularly attended the Invest in ME Conference before setting up the CMRC in 2013.
Interestingly, it was that particular year that Invest in ME invited Clare Gerada to speak about impending NHS reforms in the context of her role as Chair of the Royal College of GPs:

In the UK, the coalition government’s plans for healthcare reform will have major consequences – both for GPs and ME patients.

These reforms change the way healthcare services are being commissioned and GP commissioning groups are taking over budgets from Primary Care Trusts from April 2013 onwards. We know from our own experiences in attempting to get proper examinations and treatments for ME patients into the framework of the NHS how difficult it will be for these reforms to ensure ME patients are catered for.

The Chair of the RCGP is best placed to explain the effect that these reforms will have on GPs and their patients and the GPs’ provision for long term chronic illness such as ME. Dr Gerada has been asked to talk about the effects of the reforms on managing long term conditions, especially ME.

Of course we hope all who attend the conference will listen carefully to what everyone else has to say and learns from them in the process. This is why Invest in ME put so much effort and resources into the conferences. Biomedical research into of ME leads to better patient care and better doctor patient relationships.

Source: http://www.investinme.org/IIME Statement 2013-02.htm

This decision raised some questions and concerns, hence the charity made the statement above, linked to by the MEA in an article headlined 'Invest in ME defends invitation to Dr Clare Gerada to attend their annual conference':
http://www.meassociation.org.uk/201...are-gerada-to-attend-their-annual-conference/

Regarding this year's Invest in ME Conference and Colloquium, David Tuller accepted their invittation to give the pre-conference dinner presentation, which will be inlcuded on the DVD (earlybird discount for DVD thru May).

https://twitter.com/i/web/status/859786602700308480

 

[Kati]

Members of the CMRC regularly attended the Invest in ME Conference before setting up the CMRC in 2013.
Interestingly, it was that particular year that Invest in ME invited Clare Gerada to speak about impending NHS reforms in the context of her role as Chair of the Royal College of GPs:



This decision raised some questions and concerns, hence the charity made the statement above, linked to by the MEA in an article headlined 'Invest in ME defends invitation to Dr Clare Gerada to attend their annual conference':
http://www.meassociation.org.uk/201...are-gerada-to-attend-their-annual-conference/

Regarding this year's Invest in ME Conference and Colloquium, David Tuller accepted their invittation to give the pre-conference dinner presentation, which will be inlcuded on the DVD (earlybird discount for DVD thru May).

https://twitter.com/i/web/status/859786602700308480

While Dr Gerada spoke at Iime conference, she did not stay for the remainder of the day, citing 'having patients to see'.

 

[lilpink]

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

It occurred to me that the MEA is fond of allowing its members and users to vote on topics which might be close to their hearts. I think it might be an interesting exercise for the MEA to create a poll on their main website asking whether or not patients would like to see the MEA remain part of the CMRC or to see the MEA remove itself from its role within the CMRC? I'd suggest that this is indeed a question very close to the hearts of many people with ME and if the MEA is truly in'tent' on listening to, and reflecting, patient concerns then it would be a very democratic move to create such a poll with some sense of urgency.

 

[charles shepherd]

Would you be willing to elaborate on what direction research into ME/CFS is moving forward in UK, and how this has been influenced by the CMRC?

Jo

Just a few quick examples of what the CMRC has been doing/is doing in relation to influencing the UK biomedical research agenda for ME/CFS:

1 Encouraging students and researchers who are completely new to the subject to get involved in ME/CFS research. If you go through the attendance list at the three annual CMRC research conferences that have been held in Bristol and Newcastle you will see that there are a considerable number of 'new faces' attending these meetings. The vast majority are involved in biomedical research.

2 Encouraging representatives from the pharmaceutical industry to get involved with ME/CFS research. If you look at the Minutes for the last CMRC Board meeting we had several 'new faces' from UK pharmaceutical companies attending as observers at a discussion which looked at how recent research developments involving metabolomics etc could lead to clinical trials of new drug interventions. This does NOT involve psychotropic medication.

3 Establishing a group of leading researchers iwith expertise in epigenetics, genomics, metabolomics, proteomics etc, most of whom are again new to ME/CFS research, to prepare the study design for the largest ever research study in ME/CFS involving these new areas of research technology. OK - we know that the MEGA study failed to get funding with its first application and the MEA has been critical about certain aspects of the study design - which is stiill under discussion. So we/I do not simply endorse everything the CMRC is doing and say so when this is the case.

4 Setting up a facility within the CMRC to help young researchers with the best way to prepare research grant applications to MRC, NIHR, charitable funders etc relating to ME/CFS

5 Regularly interacting with a range of potential major research funders involving both public money (eg MRC, NIHR) and charitable trust funding (eg Wellcome Trust)

6 Setting up a full day meeting in June this year which will bring together all the main research funders here in the UK who are interested, or potentially interested in funding ME/CFS research

I could go on.....

 

[Jo Best]

@charles shepherd Thanks. I see from your reply that CMRC has done nothing more for translational biomedical research into ME/CFS in UK than Invest in ME Research was already doing and continues to do. It would have been more productive to pool resources to support what Invest in ME Research was doing instead of setting up an alternative collaborative. On the other hand, the biopsychosocial arm of the CMRC has flourished.

 

[Jo Best]

The refusal to attend international [ME] conferences, including the one on their own turf at the end of the month (Invest in ME) is quite telling too.

While Dr Gerada spoke at Iime conference, she did not stay for the remainder of the day, citing 'having patients to see'.

Exactly my point Kati. You can take the horse to water.

 

[Cheshire]

Jo

Just a few quick examples of what the CMRC has been doing/is doing in relation to influencing the UK biomedical research agenda for ME/CFS:

1 Encouraging students and researchers who are completely new to the subject to get involved in ME/CFS research. If you go through the attendance list at the three annual CMRC research conferences that have been held in Bristol and Newcastle you will see that there are a considerable number of 'new faces' attending these meetings. The vast majority are involved in biomedical research.

2 Encouraging representatives from the pharmaceutical industry to get involved with ME/CFS research. If you look at the Minutes for the last CMRC Board meeting we had several 'new faces' from UK pharmaceutical companies attending as observers at a discussion which looked at how recent research developments involving metabolomics etc could lead to clinical trials of new drug interventions. This does NOT involve psychotropic medication.

3 Establishing a group of leading researchers iwith expertise in epigenetics, genomics, metabolomics, proteomics etc, most of whom are again new to ME/CFS research, to prepare the study design for the largest ever research study in ME/CFS involving these new areas of research technology. OK - we know that the MEGA study failed to get funding with its first application and the MEA has been critical about certain aspects of the study design - which is stiill under discussion. So we/I do not simply endorse everything the CMRC is doing and say so when this is the case.

4 Setting up a facility within the CMRC to help young researchers with the best way to prepare research grant applications to MRC, NIHR, charitable funders etc relating to ME/CFS

5 Regularly interacting with a range of potential major research funders involving both public money (eg MRC, NIHR) and charitable trust funding (eg Wellcome Trust)

6 Setting up a full day meeting in June this year which will bring together all the main research funders here in the UK who are interested, or potentially interested in funding ME/CFS research

I could go on.....

7 Reinforcing Esther Crawley's legitimacy, making her appear as a competent and respectable ME/CFS researcher.

A bitter price to pay for anything they achieved, IMO.

 

[ukxmrv]

Start Date: June 1, 2013 @ 12:14 am
End Date: July 1, 2013 @ 4:35 pm

Should ME/CFS charities that fund/support research be joining the UK Research Collaborative?

Yes – definitely (39%, 241 Votes)
Yes – with caution (31%, 190 Votes)
Not sure (9%, 54 Votes)
No opinion (1%, 7 Votes)
Probably not (5%, 29 Votes)
Definitely not (15%, 101 Votes)

http://www.meassociation.org.uk/archive-of-mea-surveys/?poll_page=5

 

[Esther12]

Start Date: June 1, 2013 @ 12:14 am
End Date: July 1, 2013 @ 4:35 pm

Should ME/CFS charities that fund/support research be joining the UK Research Collaborative?

Yes – definitely (39%, 241 Votes)
Yes – with caution (31%, 190 Votes)
Not sure (9%, 54 Votes)
No opinion (1%, 7 Votes)
Probably not (5%, 29 Votes)
Definitely not (15%, 101 Votes)

http://www.meassociation.org.uk/archive-of-mea-surveys/?poll_page=5

I was a 'yes - with caution' now a 'probably not', and close to 'definitely not'. A bit of me is still holding out hope that the CMRC will really change into something worth supporting, but so far I think it has been much worse than nothing (despite the work and good intentions of many of those involved).

 

[BurnA]

Yes – definitely (39%, 241 Votes)
Yes – with caution (31%, 190 Votes)
Not sure (9%, 54 Votes)
No opinion (1%, 7 Votes)
Probably not (5%, 29 Votes)
Definitely not (15%, 101 Votes)

So 61% are against them joining definitely.

The problem with surveys like this is "yes with caution" implies a yes but that is liable to change depending on the tolerance to caution. You can't interpret a "yes with caution" to be a "yes" because it isn't possible to join with caution. You are in or out. Cautiously in is still in.

And don't get me started on "not sure" and "no opinion"

 

[Jo Best]

The question with polls is whether voters have all the info they need to make an informed decision.
In any case, while anyone is entitled to a view on anything, it is for a charity's own board of trustees or membership to choose what groups they wish to join and whether this would support their charity's own aims and objectives.
Three charities made their positions clear in 2013 on the matter of the CMRC: Invest in ME Research, The Young ME Sufferers Trust and The 25% M.E. Group.

ETA for context that I was reflecting on this poll created by MEA. I personally don't see that it's any business of the MEA to canvass public opinion on what other charities should be doing.

Start Date: June 1, 2013 @ 12:14 am
End Date: July 1, 2013 @ 4:35 pm

Should ME/CFS charities that fund/support research be joining the UK Research Collaborative?

Yes – definitely (39%, 241 Votes)
Yes – with caution (31%, 190 Votes)
Not sure (9%, 54 Votes)
No opinion (1%, 7 Votes)
Probably not (5%, 29 Votes)
Definitely not (15%, 101 Votes)

http://www.meassociation.org.uk/archive-of-mea-surveys/?poll_page=5

 

[lilpink]

it is for a charity's own board of trustees or membership to choose what groups they wish to join and whether this would support their charity's own aims and objectives.

You have a point in that respect. It's why, given the MEA's association with the CMRC, I cancelled my membership of the MEA.

 

[arewenearlythereyet]

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

 

[user9876]

I was a 'yes - with caution' now a 'probably not', and close to 'definitely not'. A bit of me is still holding out hope that the CMRC will really change into something worth supporting, but so far I think it has been much worse than nothing (despite the work and good intentions of many of those involved).

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.

 

[Jo Best]

You have a point in that respect. It's why, given the MEA's association with the CMRC, I cancelled my membership of the MEA.

That was the advice from one of the CMRC charities (before they had joined the CMRC) on one of their public sites a few years ago, for people to 'vote with their feet' if they didn't like what the charity was doing.

By the way @lilpink I edited my previous post to clarify that I was thinking of the poll MEA had created in 2013 (as I don't see that it's any business of the MEA to canvass public opinion on what other charities should be doing) not your earlier suggestion:

It occurred to me that the MEA is fond of allowing its members and users to vote on topics which might be close to their hearts. I think it might be an interesting exercise for the MEA to create a poll on their main website asking whether or not patients would like to see the MEA remain part of the CMRC or to see the MEA remove itself from its role within the CMRC? I'd suggest that this is indeed a question very close to the hearts of many people with ME and if the MEA is truly in'tent' on listening to, and reflecting, patient concerns then it would be a very democratic move to create such a poll with some sense of urgency.

 

[Maggie21]

I was a 'yes - with caution' now a 'probably not', and close to 'definitely not'. A bit of me is still holding out hope that the CMRC will really change into something worth supporting, but so far I think it has been much worse than nothing (despite the work and good intentions of many of those involved).

If I remember correctly I was a not sure at the time, only having being diagnosed around early 2012. However, having done more and more research and gaining a much better understanding of the whole PACE / MEGA / BPS thing since then, I would now want a choice of 'over my dead body'.

 

[lilpink]

I would now want a choice of 'over my dead body'.

..sadly it could come to that for many of us