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MEGA and PAG website update (March 29th 2017)

trishrhymes

trishrhymes

Senior Member
Messages
2,158
AndyPR said:
How to be nasty while sounding nice about those people who left the PAG.
Click to expand...

Yes, I noticed that - could be paraphrased: 'now the nuisances have gone, things are going swimmingly, Crawley is the best thing since sliced bread and we will conquer the world.'

I would hope there are others on the PAG who have our best interests at heart and understand the issues. I wonder how many of them are really happy with Crawley being in charge.

Can they not see the dangers - all that delicious questionnaire data for her and her deluded students to feed on and write more dreadful papers doing us down. And such a huge sample size it will take decades to complete before they start on their genomics, let alone the other bits of science they've tagged on the end to keep us happy. No thank you.

Does anyone know whether the existing ME/CFS biobank applied to the same fund, and if so whether they were rejected too...? @charles shepherd?
 
Cinders66

Cinders66

Senior Member
Messages
494
This delay in funding will just mean the MEGA merry go round will spin on for longer so I'm actually a bit disappointed as I think it inevitable they will get it eventually. Perhaps we should have a ticker running, I think Stephen Holgate was raising the idea of large scale metabolomic studies in 2008 at the ME expert group and mentioned it subsequently , 2015 it was formalised into an announcement of intent, 2017 funding was applied for.....
Since 2008 id have like to have seen the establishment of the research and care severe ME inpatient service Dr Bansal had wanted to set up and some targeted money investigating the severely sick patients who stayed there. Just an alternative scenario that might have got somewhere by now. On A private forum page there's been discussions on how to manage personal hygiene if you can't shower or cope with teeth cleaning - just to put this in context of "real life" for sufferers waiting.
 
Esther12

Esther12

Senior Member
Messages
13,774
If funders are now aware that patients might have been right about the whole ME/CFS drama while Crawley was wrong, I can't imagine them wanting to be associated with that car-crash. Maybe one of the funders already tied to PACE/Wessely/Crawley etc will think 'in for a penny, in for a pound'.
 
slysaint

slysaint

Senior Member
Messages
2,125
More from the Qand A:
"
2. Will MEGA include people with M.E. who are severely affected?

Yes. The Scientific Team agree that this it is absolutely essential to include those who are severely affected by M.E., which means those who are house and/or bedbound.

The funding bodies have very clear limits on how much money we can ask for. This means that we are not able to include home visits to house and/or bedbound patients, which are enormously expensive, in our initial application.
"
17. Will you be measuring orthostatic intolerance?

We would like to but this depends on whether the additional costs are perceived by the funders as being justified.

18. Will you use the Bell Disability Scale?

We haven’t decided yet. This will be decided at a later stage and will depend in part on whether this is perceived by the funders as being justified.

19. Are you quantifying the physical functional capacity of donors?

How we define physical function will be decided at a later stage.
"

Not a lot seems to have been decided or worked out beforehand...............
 
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U

user9876

Senior Member
Messages
4,556
It seems to me from what little they have released is that their proposal is half baked in terms of defining what they are going to measure. Then they seem to just be talking about collecting samples on mass for future experiments.

Given the existence of the Biobank this just looks like a badly worked out replication of an existing resource. So I'm not surprised that funding was turned down. If it wasn't I think it would represent a serious waste of money.

I'm surprised that they aren't doing some kind of pilot study first. Instead it seems like an ill thought out all or nothing data collection strategy which without careful thought about what to test and the variability of disease and what to measure could end up as a massive white elephant with the wrong samples and associated data.

It could be well worked out and just badly explained. But judging from the lack of quality in Crawley's published work I doubt it. She has produced at least one trial protocol that will lead to uninterpretable results and waste £1m of NHS research funds.

Perhaps the difference here is who is on the committees. Crawley has done well with government funding which is often judged by membership of the club rather than on merit.
 
JohnCB

JohnCB

Immoderate
Messages
351
Location
England
An update from the Scientific Team and Patient Advisory Group
Click to expand...

I don't see anything that looks like the actual words of anyone on the PAG. There are no quotes or statements that look like actual quotes. There are no clear opinions of anyone on the PAG.

In fact I think the only actual opinions of anyone on the PAG are from those who resigned and even those were hampered by some sort of confidentiality agreement. I would just love to read a freely written report from the PAG without any editing by their masters.

The whole statement newly posted by MEGA is entirely written in closely garbled corporatese. I don't trust statements like that. I don't trust people who prevent me from hearing the opinions that I need to know.

Both the Scientific Team and the Patient Advisory Group agree that it is absolutely essential that we collect data from those most severely affected by M.E., and those affected long term. This will require home visits which are very expensive, and the financial limit of the current application will not cover this. However, it was confirmed at the meeting that we will submit an application to this current funding call with a full commitment that further applications will be made to include home visits. By establishing the MEGA bioresource and proving to funders that we can collect data from patients in clinic, the chances of us successfully accessing further funding are hugely increased.
Click to expand...

My bolding; their words; my interpretation, I am sure there is a message trying to get of there somehow. This is what I think it is -

We are going to do another application. It will not include home visits. If we get this we will, perhaps, make a further funding application or maybe more than one application. You can expect one of these follow-on applications to include a request for home visits. However if we get our first tranche of research funds, this study will go ahead without home visits regardless of whether we get any further applications approved. We will go ahead with research which does not include home visits. Home visits are an optional add-on if we get an additional application approved. Don't hold your breath waiting for home visits to be incorporated.

The bit in the last sentence quote above "... proving to funders that we can collect data from patients in clinic ..." astonished me. Why do they need to prove this to funders? I thought this was supposed to be an experienced team.
 
A

AndyPR

Senior Member
Messages
2,516
Location
Guiding the lifeboats to safer waters.
Action for ME seem to have read a different update to me. This is from their Facebook post https://www.facebook.com/actionforme/posts/10155136276198209:0
Action for ME said:
The Scientific Team and the Patient Advisory Group for MEGA have confirmed that data will be collected from those most severely affected by M.E., preferably through home visits.

The latest update from the MEGA team confirms that including data from this patient group is considered “absolutely essential”.

It also confirms that post-exertional malaise will be a prerequisite for inclusion in the bioresource and that those whose samples are collected for the bioresource will have their diagnoses and severity of illness confirmed and recorded at point of collection.

The update explains that a preliminary funding application to the Wellcome Trust has been turned down but the team remains focused and is working on other funding applications.

It also adds that while three people have resigned from the patient reference group the remaining 12 – some of whom have experience of severe M.E. – remain enthusiastic and “valuable progress has been made”.
Click to expand...
Not sure if this qualifies as an alternative truth but, in my opinion, it seriously misrepresents the situation in regard to severely affected.
 
Cinders66

Cinders66

Senior Member
Messages
494
It's very manipulative by AFME they do this often select the bits that they want . It's what politicians do if they can get away with it but instills a great deal of distrust and dislike when you are actually aware of the spin. They rely on few people actually bothering to read further.
 
Esther12

Esther12

Senior Member
Messages
13,774
What's really worrying is that this could be their best effort at communicating the details of MEGA honestly to patients.
 
Cinders66

Cinders66

Senior Member
Messages
494
Were the severely affected included in the original application ? Were the basics of the original application even published, there was the "debate" , the PAG formation announcement then it all went quiet, unless I missed it
 
jimells

jimells

Senior Member
Messages
2,009
Location
northern Maine
Congrats fellow suffers! MEGA is dead! I'll be very much surprised if we hear anything further about this steaming pile. The UK establishment operates on herd instinct, and Wellcome Trust, the leader of the funding herd, has spoken loud and clear.

Sir Simon must be pissing his pants. This is the first show of no confidence by the establishment that has protected him for so long. It is a serious blow because of the excessive hype around MEGA - the fools have overplayed their hand, once again.

The psychobabblers just don't get that no matter which way they turn, patients will be there to oppose them, because the only alternative is to just lay here and wait to die. If fighting them is some sort of mental illness, then I will proudly wear the label.
 
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