New MEGA study website (30 November 2016)

[Dx Revision Watch]

From the MEGA site Comments and Questions form page:

Thank you for contacting the MEGA Team. Currently we have no funding for this project and the team is working on an application to secure funding to take this work forward. We do not have the capacity to respond to individual queries but we will review contact/questions every couple of weeks and add to the Q&A where appropriate. As the design of the project develops, we will provide further information and progress updates on the MEGA website.
​

Anticipating a delay in receiving a response (if at all) from the MEGA Team, I asked the following on AfME's Twitter:

"Does MEGA intend to publish a list of those selected for the PAG and by what date, please?"​

Today, AfME Twitter responds:

@dxrevisionwatch Pls ask MEGA team via http://www.megaresearch.me.uk/contact-us​

Today (5 December) I have asked the following Q via the MEGA Contact form:

"It is understood that successful applicants for membership of the Patient Advisory Group (PAG) can anticipate being notified on 13-14 December.

"Does the MEGA Team intend to publish the names of those who have accepted a seat on the PAG and by what date does MEGA anticipate publishing the confirmed membership list?"

​

I have also asked, in a second Q via the MEGA Contact form:

"It is understood that a draft terms of reference will be agreed by the appointed [Patient] Advisory Group members and the remainder of the MEGA team.

"Does the MEGA project have a Steering Group overseeing the project and who does the Steering Group comprise?

"Have Terms of Reference been drawn up and agreed for a Steering Group for the MEGA project and when will a copy be published?"​

I'll update, if and when any response to either Q is posted on the MEGA Q & A page.

 

[Jan]

One question I would like the patient reps to ask MEGA is

Are you happy to proceed with this study knowing that the vast majority of ME patients have absolutely no trust or confidence in one of it's members?

Is this a good way for a study like this to begin, a vote of no confidence in their main 'expert'?

 

[Countrygirl]

I am just listening to Prof Holgate's talk to the Edinburgh ME Self-Help group in 2014 and thought I would share it.

You scroll down to the video and below are a set of slides.

http://www.edmesh.org.uk/new-inroads-the-uk-cfsm-e-collaborative/

 

[Binkie4]

I am just listening to Prof Holgate's talk to the Edinburgh ME Self-Help group in 2014 and thought I would share it.

I have only listened to the first 10 minutes or so ( the rest later) but in this talk to pwme in May 2014, Prof Holgate is acknowledging clearly that ME is a biophysical illness that has not been served well by doctors. He gives a recovery/ improvement figure of 22% from treatments I.e.not the 60% given by PACE. He seems relatively sympathetic to pwme.

It doesn't quite fit the picture of his asking Wessely for advice on collaborative members but I'm sure he did, and also treating Keith Geraghty as badly as he did.

So which is the real Prof Holgate?

 

[Binkie4]

The quote above and link to the video is from @Countrygirl. (Am still working on the technicalities.)

 

[Esther12]

He gives a recovery/ improvement figure of 22% from treatments I.e.not the 60% given by PACE.

22% is the recovery rate PACE claimed in their spun paper, so if he's repeating that it's not great.

 

[user9876]

I have only listened to the first 10 minutes or so ( the rest later) but in this talk to pwme in May 2014, Prof Holgate is acknowledging clearly that ME is a biophysical illness that has not been served well by doctors. He gives a recovery/ improvement figure of 22% from treatments I.e.not the 60% given by PACE. He seems relatively sympathetic to pwme.

It doesn't quite fit the picture of his asking Wessely for advice on collaborative members but I'm sure he did, and also treating Keith Geraghty as badly as he did.

So which is the real Prof Holgate?

The 22 % is the claimed recovery figure from pace after they lowered the recovery thresholds below the entry criteria.

 

[Binkie4]

@User 9876- thank you. Just been checking this. Results much lower if original protocol used.

 

[user9876]

@User 9876- thank you. Just been checking this. Results much lower if original protocol used.

If they had used their original definition of recovery (which is quite generous) then the results would be non-significant. I.e. the differences may well have happened by random. I think there were sight differences between the groups with their improvement metrics. But this is based on subjective measures which are subject to placebo effects due to reporting biases.

 

[JoanDublin]

I have only listened to the first 10 minutes or so ( the rest later) but in this talk to pwme in May 2014, Prof Holgate is acknowledging clearly that ME is a biophysical illness that has not been served well by doctors. He gives a recovery/ improvement figure of 22% from treatments I.e.not the 60% given by PACE. He seems relatively sympathetic to pwme.

It doesn't quite fit the picture of his asking Wessely for advice on collaborative members but I'm sure he did, and also treating Keith Geraghty as badly as he did.

So which is the real Prof Holgate?

Holgate last month said of Esther Crawley's FITNET that we need 'more quality research like this'. Make of that what you will

 

[Cinders66]

https://spoonseeker.com/2016/12/03/taking-a-closer-look/#comments

Apologies if this has already been posted somewhere here, but I have only just stumbled across it and it contains important information.

I am just listening to Prof Holgate's talk to the Edinburgh ME Self-Help group in 2014 and thought I would share it.

You scroll down to the video and below are a set of slides.

http://www.edmesh.org.uk/new-inroads-the-uk-cfsm-e-collaborative/

Holgate slide 2 -says - 50% can't work and 10% housebound
These are significantlyy lower than are normally quoted on ME and I assume come from the up to 1% /600,000 figure from broader criteria. It's one of the fundamental issues with accepting U.K. Broad umbrella approach and NICE as it strongly dilutes impact/severity of ME by including looser fatigue syndromes , the severe become an even more ignored smaller minority and the focus goes on helping the ambulent fatigued in work with Behavioral treatment.

 

[Woolie]

The reason that the timescale is so short is because the mainstream funder to whom we want to apply for MEGA funding has an application deadline in early January 2017.

OMG, if they haven't got a fully fleshed out research plan now, then its too bloody late! I plan my research proposals for major grant applications over a period of six months minimum. It would take even longer with a huge group like this.

I expect these researchers are thinking strategically about who might actually end up reviewing their still-imaginary grant proposal (the proposal will be sent out for review by peers, a bit like a journal article). Anyone "in the tent" is automatically disqualified from being a reviewer. Therefore, inviting people in can be a way of ensuring they don't topple the project. Not saying that's what they're doing, but it does mean critics who might be potential reviewers might be better to stay on the outside, where they can be heard (this could include people like Jonathan Edwards)

 

[trishrhymes]

OMG, if they haven't got a fully fleshed out research plan now, then its too bloody late! I plan my research proposals for major grant applications over a period of six months minimum. It would take even longer with a huge group like this.

They do seem to be remarkably incompetent. Maybe Crawley is used to putting in research plans that she knows will be peer reviewed by her BPS chums, so she can be sloppy in her methods. Holgate should know better. Looks like there's nothing mega about what they are planning to apply for now - just setting up a biobank and questionnaire database and filling them with samples. No actual research at all.

That may only involve Crawley. No big team, no great collaboration. Just a list of biomedical researchers who might at some later date put in applications for funding to use the resources in the biobank....

 

[slysaint]

just setting up a biobank and questionnaire database

It's interesting that they are setting up a new biobank; but then at least this way the exisiting biobank will not get 'contaminated' by all the general fatigue subjects and the possibly skewed questionnaires.

 

[Binkie4]

I am just listening to Prof Holgate's talk to the Edinburgh ME Self-Help group in 2014 and thought I would share it.

You scroll down to the video and below are a set of slides.

http://www.edmesh.org.uk/new-inroads-the-uk-cfsm-e-collaborative/

Have just finished watching Prof Holgate's talk to the Edinburgh ME self help group, posted by @Countrygirl. I have to admit it was not what I expected.

Prof Holgate was clear in stating that ME is a real biomedical disease, that patients are badly treated by doctors, and that science in ME is poor. He went on to discuss the new model of medicine, -omics where scientists, mathematicians, engineers, computer scientists ( the best in their field) come together to work on a problem. There was not one mention of a psychologist or psychiatrist.

On the other hand, we have discussed his involvement with Wessely and treatment of Keith Geraghty.

The two threads don't seem to align. So who is Prof Holgate really? A true scientist or ' turned' by the BPS mob?

 

[Countrygirl]

Have just finished watching Prof Holgate's talk to the Edinburgh ME self help group, posted by @Countrygirl. I have to admit it was not what I expected.

The two threads don't seem to align. So who is Prof Holgate really? A true scientist or ' turned' by the BPS mob?

Yes, it is confusing and we seem to be receiving mixed messages. I do wonder if he is being unduly influenced by Prof Crawley and he hasn't tumbled to the reality of her position and views and the serious impact she and her BPS friends have had on the patient population. If we could just sit him down and speak with him I have the sense that we may be pleasantly surprised. However as long as EC is pulling the strings it does seem a hopeless venture.

Maybe we will have a better picture after he speaks tomorrow with Lady Mar.

 

[worldbackwards]

I imagine Holgate thinks that there is enough of "CFS" to be carved up and handed round to everyone who wants a bit. I don't think he's twigged that some people see this as a zero sum game.

 

[Esther12]

The Wellcome trust hosts the Science Media Centre - it would not surprise me if they were very politically on-side with MEGA and friendly discussions at the top had been had about it, regardless of the quality of the actual application.

 

[Valentijn]

The two threads don't seem to align. So who is Prof Holgate really? A true scientist or ' turned' by the BPS mob?

It's not at all uncommon for BPS types to say one thing, especially when addressing certain audiences, and actually do something rather different. In short, they lie, and they think it's okay because it's supposedly for our benefit.

I believe the worst of them until they explicitly reject the BPS approach and their behavior backs up their words.

 

[Dx Revision Watch]

The Wellcome trust hosts the Science Media Centre - it would not surprise me if they were very politically on-side with MEGA and friendly discussions at the top had been had about it, regardless of the quality of the actual application.

http://www.meassociation.org.uk/201...irth-says-dr-charles-shepherd-3-october-2016/

Give this MEGA project a chance to fly – don’t try to strangle it at birth, says Dr Charles Shepherd |

3 October 2016

(...)

"The MEGA study has also attracted the very positive attention of the Wellcome Trust _ the largest provider of non governmental funding for biomedical research here in the UK and the largest research funding charity in the world.."