Behind the scenes: Setting up the UK CFS/ME Research Collaborative (UK CMRC) - Tymes Trust

[Chickadee9]

I just hope your whole post is sarcastic...

Yes it is. Next time I'll insert a disclaimer...I hadn't realised it was necessary.

 

[Dx Revision Watch]

Why do you consider "this thread" needs satire?

I repeat what I wrote to Chickadee9 in an earlier post:

It should be possible, on a forum, for any individual to voice concerns about the assembly and MO of the Collaborative, or about the research interests of its Executive or non executive members, or about the clauses written into its Charters or any other aspect of its operation without being lumped together as part of an "anti-CMRC clique."

​

 

[Chickadee9]

Why do you consider "this thread" needs satire?

I repeat what I wrote to Chickadee9 in an earlier post:

It should be possible, on a forum, for any individual to voice concerns about the assembly and MO of the Collaborative, or about the research interests of its Executive or non executive members, or about the clauses written into its Charters or any other aspect of its operation without being lumped together as part of an "anti-CMRC clique."

​

I think there has been much constructive discussion on this thread. But think of what started it and its title. Someone posting about a bunch of emails they couldn't reveal or validate in any way, just before the conference started. Coincidence? I think not. That's what I was satirising---not the subsequent discussion.

 

[Dx Revision Watch]

@Chickadee9

I find the phrase "anti-CMRC clique" as offensive as the "CMRC whingers" phrase I've noted being used on Twitter.

It serves to trivialise concerns being raised by individuals.

If you take issue with any of the comments made within individual posts - that's fine. But constructively criticise those posts - don't lump those who have concerns about specific aspects of the Collaborative as part of a "clique."

You post anonymously and that is your prerogative. We know nothing about you. I am Suzy Chapman. I am a carer of an adult with ME for 15 years since the age of 13. I am the owner of Dx Revision Watch. I have co-authored and collaborated in several published journal papers around a DSM-5 disorder term with a high profile U.S. psychiatrist. I am affiliated to no organisations. There is quite a lot that could be said about me.

But I am not part of a "clique."


"Someone posting about a bunch of emails they couldn't reveal or validate in any way..."

You are doing it again.

The "bunch of emails" are copies of correspondence obtained under the FOI Act from the MRC.

This material was obtained by or on behalf of Jane Colby, Executive Director, The Young ME Sufferers (TYMES Trust), a UK patient organisation registered with the English Charity Commission.

The notice of the report was circulated by Jane Colby.

The notice was posted here by Dolphin, who is well known to many of us.

But you choose to present the topic of this thread as:

"Someone posting about a bunch of emails they couldn't reveal or validate in any way..."

Just as you seek to dismiss my concerns and those of others as coming from a "clique."

Please stop it.

 

[Dx Revision Watch]

In case you are not aware Chickadee, TYMES Trust and The Grace Charity were not the only registered patient organisations that have not joined the Collaborative. These two did not join, either:

Invest in ME

The 25% M.E. Group

 

[Bob]

"Someone posting about a bunch of emails they couldn't reveal or validate in any way..."

You are doing it again.

The "bunch of emails" are copies of correspondence obtained under the FOI Act from the MRC.

But we haven't seen the original emails. We've only seen highly edited extracts. I like and respect Jane Colby and I love and value the work that the TYMES trust does, but I still prefer to assess information for myself rather than being presented with carefully edited extracts or interpretations.

 

[Chickadee9]

@Chickadee9

I find the phrase "anti-CMRC clique" as offensive as the "CMRC whingers" phrase I've noted being used on Twitter.

It serves to trivialise concerns being raised by individuals.

If you take issue with any of the comments made within individual posts - that's fine. But constructively criticise those posts - don't lump those who have concerns about specific aspects of the Collaborative as part of a "clique."

You post anonymously and that is your prerogative. We know nothing about you. I am Suzy Chapman. I am a carer of an adult with ME for 15 years since the age of 13. I am the owner of Dx Revision Watch. I have co-authored and collaborated in several published journal papers around a DSM-5 disorder term with a high profile U.S. psychiatrist. I am affiliated to no organisations. There is quite a lot that could be said about me.

But I am not part of a "clique."

"Someone posting about a bunch of emails they couldn't reveal or validate in any way..."

You are doing it again.

The "bunch of emails" are copies of correspondence obtained under the FOI Act from the MRC.

This material was obtained by or on behalf of Jane Colby, Executive Director, The Young ME Sufferers (TYMES Trust), a UK patient organisation registered with the English Charity Commission.

The notice of the report was circulated by Jane Colby.

The notice was posted here by Dolphin, who is well known to many of us.

But you choose to present the topic of this thread as:

"Someone posting about a bunch of emails they couldn't reveal or validate in any way..."

Just as you seek to dismiss my concerns and those of others as coming from a "clique."

Please stop it.

I was wrong to use the phrase "anti-CMRC clique", for which I apologise. It was done in the heat of the moment. I fully accept that people on here have valid concerns. What I felt strongly about was the way this thread started. It was clearly intended as spoiling tactic ahead of the CMRC conference. Others on here challenged the validity and credibility of what was originally posted and, thankfully, we then moved on to a much more constructive discussion. Some of the organisations that objected to the CRMC are clearly desperate to find anything that will tar it with a psychiatric brush, however tenuous the link or the source, to justify their decision. Increasingly, I believe they will have to accept they were wrong. It was interesting to see Professor Edwards, who is closely associated with Invest in ME, not only attending but posting positively about it on PR. We will achieve more if we all act together.

 

[Bob]

@Dx Revision Watch , I think most people on this forum recognize you as a highly independent voice and a powerful advocate. And many of us are grateful for it.

 

[ukxmrv]

But we haven't seen the original emails. We've only seen highly edited extracts. I like and respect Jane Colby and I love and value the work that the TYMES trust does, but I still prefer to assess information for myself rather than being presented with carefully edited extracts or interpretations.

Bob, have you asked Jane Colby for the complete emails or put in a FOI request yourself to see them?

I'm guessing when the TYMES Trust presented the edited version they were intending to do people a favour and to put all the salient bits together so we cognitive challenged people could read them.

it probably never occurred to them that you would see it that way.

 

[Bob]

Bob, have you asked Jane Colby for the complete emails or put in a FOI request yourself to see them.

I'm guessing when the TYMES Trust presented the edited version they were intending to do people a favour and to put all the salient bits together so we cognitive challenged people could need them.

Tt probably never occurred to them that you would see it that way.

I'm having a really bad week, which is partly why I'm getting into irritable arguments that I should know to avoid. So I've not done anything proactive this week. I was hoping that someone else would get hold of the emails and forward them to me but no one has yet.

 

[Dx Revision Watch]

A couple of years ago, I pulled up Dr Christian Jessen (Channel 4 Embarrassing Bodies) for his use on Twitter of the phrase "the ME brigade."

Thereby merging all ME patients/carers/advocates into one faceless entity.

I asked him whether he also uses the term "the COPD brigade" or the "MS brigade" or the "diabetes brigade." He did not respond.

Your use of "the anti-CMRC clique" isn't so far away from that.

I hope I've made my point.

 

[Min]

What I felt strongly about was the way this thread started. It was clearly intended as spoiling tactic ahead of the CMRC conference.

No it wasnt, it was intended to give very important information on how the Collaborative was set up with Wessely's involvement, and by doctors who wanted demonise patients by broadcasting totally inaccurate information that we patients harass researchers.

 

[Wildcat]

.
Chickadee9 wrote: "Some of the organisations that objected to the CRMC are clearly desperate to find anything that will tar it with a psychiatric brush, however tenuous the link or the source, to justify their decision. Increasingly, I believe they will have to accept they were wrong."
.

.Which "organisations" ?

What "tenuous links" ?

.

 

[Sasha]

I'm guessing when the TYMES Trust presented the edited version they were intending to do people a favour and to put all the salient bits together so we cognitive challenged people could need them.

The TT email has, near the beginning:

Our concerns continue. The following information is from 212 email chains and associated attachments received from an FOI request to the Medical Research Council (MRC).​

The salient bits for the TT appeared to the the bits that fitted their idea that the CMRC was something to be concerned about. They haven't included a summary of anything positive from those 212 emails so that the cognitively challenged don't have to read them all. I think the concern that many of us have about the TT summary is biased. And we can't assess that without reading the 212 emails for ourselves.

I'm not about to do it: I think there are much more positive and constructive things that I can be doing with my time.

I also have concerns about the timing of this so close to the conference. I'd like to hear the TT's view of the conference.

There really do seem to be some organisations and some individuals who, up til this point, have had a very negative view of the CMRC. I can understand that, given the power imbalance that there has been between the BPS school on the one hand and patients and biomedical scientists on the other. However, I think that anyone who holds to a completely negative view of the CMRC after the conference we've just had is really going to have a job to appear remotely credible.

It's maybe too much to expect those people and groups to adjust their ideas quickly enough to be publicly saying that they've changed their minds but I hope that they'll adjust their positions, before too long. A lot is at stake and in my view it would be very wrong to continue to try to damage the CMRC and the organisations that support it, now that we've seen what a tremendous potential it has to be a force for good.

It would also be a mistake to continue to behave as though the CMRC is acting as a single entity. There are conflicting agendas within it. Our agenda is now rising into the ascendant. Let's support our players.

 

[Dolphin]

What I felt strongly about was the way this thread started. It was clearly intended as spoiling tactic ahead of the CMRC conference.

I was not involved in when this information was released. It was posted on a private list with "permission to post" and I posted it fairly promptly after that.

 

[Wildcat]

Sasha wrote:
" there really do seem to be some organisations and some individuals who, up til this point, have had a very negative view of the CMRC."
.
Which organisations?


And how you define "negative"? 'Negative' is too often used as a dismissive term which conveniently sidesteps valid critique.
.

If, by "negative" you mean critical, then we have a casually applied censorship problem.

.

 

[Bob]

We will achieve more if we all act together.

I think it's a shame that all the ME charities don't act together and speak with one voice. But this is for complex historical reasons. It simply hasn't been possible in the past to "act together" because of the politics and vested interests. Whether they can come together in the future remains to be seen, but there are still vested interests out there that are more interested in propagating their own careers rather that support patients. So I think it's overly simplistic and naive to simply say that we will achieve more if we all act together. Some in the field of ME are not interested in protecting the interests of patients.

 

[ukxmrv]

The TT email has, near the beginning:

Our concerns continue. The following information is from 212 email chains and associated attachments received from an FOI request to the Medical Research Council (MRC).​

The salient bits for the TT appeared to the the bits that fitted their idea that the CMRC was something to be concerned about. They haven't included a summary of anything positive from those 212 emails so that the cognitively challenged don't have to read them all. I think the concern that many of us have about the TT summary is biased. And we can't assess that without reading the 212 emails for ourselves..

I can see your point Sasha that you would like to read all the materials and be able to look at the good points and the bad points and have those reported. Also that the Tymes Trust has expressed concerns about the Trust previously.

The point that I would like to make is that the TT have released parts of the emails etc that they think support their concerns. This should, if they are correct and not taken out of context or faked, stand on their own merits.

When we prepare (as examples) our criticism of the PACE trial we don't ask ourselves what in the trail was beneficial to patients. If we write a critique it is exactly that. I think that the TT can also be given the same freedom to do their critique in the same way.

Even if the Conference was a huge success then the concerns that the TT have highlighted are still going to be important or unimportant based on their own merits. The TT may not think that the conference was that much of a success or that anything good or permanent will come of it. They may also feel that one reasonable conference is not enough to explain away what they see are being the failings of the CMRC. It's one judgment against another and the TT may feel that their reasons are valid.

 

[Sasha]

Sasha wrote:
" there really do seem to be some organisations and some individuals who, up til this point, have had a very negative view of the CMRC."
.
Which organisations?

The ones that refused to join it such as the Tymes Trust.

Edit: Actually, IiME at least appears much more positive than I had assumed, given how some of its supporters have attacked other charities for being in the Collaborative, unless they've changed their position since this:

http://www.investinme.org/IIME-Newslet-1304-01.htm

On 22 April the MRC and Science Media Centre will hold an event to publicise the launch of one collaborative which proposes to bring together ALL research, 'including fatigue', into one hat - a collaborative tent which only those organisations who sign up to a pre-arranged charter will be able to join.


On 30th May two small charities with a BIG Cause will convene a Colloquium which will be held in London bringing together all of the major biomedical research into ME initiatives in the world. The meeting is open to researchers who will contribute to biomedical research into ME and will be funded by the charities themselves.


We wish both ventures well - Invest in ME supports all good research initiatives which are truly meant to advance the cause of ME patients and their families and lead to correct information and treatment for the disease.

Indeed, we are certain that the IiME/AHMF Biomedical Research into ME Colloquium in London in May will create ideas and support research which will benefit those biomedical research initiatives that may, possibly, eventually emanate from the MRC/SMC collaborative and from those organisations included who are genuinely interested in biomedical research into ME.​

The 25% Group seemed more disapproving:

http://www.25megroup.org/info_news.html

STATEMENT FROM THE 25% ME GROUP REGARDING THE CFS/ME RESEARCH COLLABORATIVE CHARTER (CMRC)
MAY 2013

The 25% ME Group is the only UK charity representing those who are severely affected with Myalgic Encephalomyelitis, a World Health Organization ( ICD10.9.3) classified disease, recognised by the UK Government as neurological. We subscribe to the use of the International Consensus Criteria (ICC) to clearly identify and separate ME from CFS, in order to ensure that ME is respected, treated and researched as a serious neurological disease impacting upon multiple systems of the body.

Therefore we cannot support nor validate the recently created CFS/ME Research Collaborative charter (CMRC) since, in our opinion it is an unacceptable waste of precious research funds, accommodating a range of research across a wide and vague criteria range not specific to ME. The CMRC, in our opinion, is more likely to prolong the current state of confusion rather than bring about much needed medical research or clarity.

Under the umbrella term “CFS/ME”, so often used to mean Chronic Fatigue (CF), leading to the mistreatment of people with ME; the CMRC does not and cannot represent or safeguard the needs of people with Severe ME.

It is wholly unacceptable for people with chronic fatigue and mental health issues to be included in research for Myalgic Encephalomyelitis and for people with Myalgic Encephalomyelitis to be used for CF research.

Without the separation of ME from CFS and particularly Chronic Fatigue, the 25% ME Group fears there will continue to be misdiagnosis, misrepresentation and negation of Myalgic Encephalomyelitis alongside the inappropriate perpetuation of psychological therapies charading as treatment, that, as our research has shown, does great harm to our members.

The 25% ME Group supports the need for medical research, using specific criteria to safely identify Myalgic Encephalomyelitis, so that ME can be studied and identified accurately in research; this will not come about through, non ICC-based research into vague “CFS/ME”.

For these reasons, the 25% ME Group, along with other concerned ME charities (ie, Tymes Trust, IiME and Grace Charity for ME) wholeheartedly cannot support the CFS/ME Research Collaborative charter.​

And how you define "negative"?

In the same way as a dictionary does.

'Negative' is too often used as a dismissive term which conveniently sidesteps valid critique.

And that's not the way in which I am using it.
.

If, by "negative" you mean critical,

I mean "disapproving".

then we have a casually applied censorship problem..

I really can't follow your logic here. I'm saying that certain people and organisations have a disapproving view of the CMRC. In no way have I censored them.

 

[Sasha]

I can see your point Sasha that you would like to read all the materials and be able to look at the good points and the bad points and have those reported. Also that the Tymes Trust has expressed concerns about the Trust previously.

The point that I would like to make is that the TT have released parts of the emails etc that they think support their concerns. This should, if they are correct and not taken out of context or faked, stand on their own merits.

When we prepare (as examples) our criticism of the PACE trial we don't ask ourselves what in the trail was beneficial to patients. If we write a critique it is exactly that. I think that the TT can also be given the same freedom to do their critique in the same way.

Even if the Conference was a huge success then the concerns that the TT have highlighted are still going to be important or unimportant based on their own merits. The TT may not think that the conference was that much of a success or that anything good or permanent will come of it. They may also feel that one reasonable conference is not enough to explain away what they see are being the failings of the CMRC. It's one judgment against another and the TT may feel that their reasons are valid.

All fair points and we're in general agreement. I was seeking to provide a corrective to the view (not implying that this is your view!) that the TT are without bias or that we have a full and balanced picture of what's what when we rely on their summary.