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New MEGA study website (30 November 2016)

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
Messages
3,061
Location
UK
First let me tell you that if don't always agree with you, I am very grateful for the work you're doing, Charles.

But I really must tell you that I find the way you refer to "real life" whenever someone disagrees with you, very offensive when dealing with people that are deprieved of "real life" because of this terrible disease.

Some of us didn't get the chance to know what "real life" is because they were stuck by the illness too young. Does that mean their experience is less valuable?

And a lot of us have professional skills that haven't been erased because of the disease and perfectly know what it's like to work with people with different viewpoints...

Indeed.

@charles shepherd

The "real world" for me is primary carer of a young man who has had no "real life" for 17 years.
Additionally, in "real life" I have a husband who had cancer 5 years ago and a stroke, last year.
And until last year, I was advocating long distance with a number of agencies for an 89 year old mother with advancing Alzheimers.

All three have required me to advocate on their behalf, to deal with decision makers, to liaise with multidisciplinary teams and negotiate in their best interests. Before my son became ill, I sat on committees; prior to that I had a professional career in graphic design.

It is rather insulting, Charles, to imply that I have little understanding of how panels, committees and work groups function.
 
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snowathlete

Senior Member
Messages
5,374
Location
UK
I see they have a deadline of one week for applications for the patient advisory group and that the application process is being administered by Action for ME.

This suggests to me that they want to control who gets into the patient advisory group, as it lets them invite patients they want involved while it is open while closing it off nice and quick before others can apply from outside. I really hope that patients in the community apply and if they don't get in post all about their application and how it was handled.
 
Messages
38
Location
Leeds, UK
I spoke to someone at the Afme office about this today and they claim that it's MERUK, MEA and someone from the NIHR who decide on the patients advisory group for the adult arm of MEGA and that Afme have no say?!!!!!! The children's arm advisory group is already in place and it's the same one used in FITNET! I think thr whole thing is a farce and we're being stitched up again, a la PACE. There is a lot of conflicting info. Total shambalonics IMO

So they are using the FITNET child advisory group, the same group which decided it was OK for Crawley to say she was using the NICE entry criteria for FITNET even though she wasn't. (She got rid of the requirement for PEM!) The same advisory group which also decided it was OK for kids on the activity management 'control' arm to be encouraged to increase their activity by 10-20% a week up to eight hours per day.

I can't say I am encouraged.
 

snowathlete

Senior Member
Messages
5,374
Location
UK
Very much so. This is the same old business that if you disagree with us you are not welcome. We do not want to put people off but we are trying our hardest to do so.

I agree entirely. These criteria tell us that the MEGA investigators and charities want to control the kinds of patients on the advisory panel and waht their views are. They may as well have said "Please only apply if you signed the petition in support, if you disagree with anything we will be doing, don't bother applying"

And if those running the study want to control what the patient advisory panel think to this degree then this suggest they want to control the outcome of the study itself. That is not science, but it's easy to do if everyone pulls together, which is easy to do if you only let people who agree with you in.
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
Messages
3,061
Location
UK
@charles shepherd

I hope Dr Shepherd will contact Prof Holgate and whoever else was involved in the decision, this evening, and insist that an application window of only 6 days is grossly inadequate for any stakeholder group; that it fails to meet what a disability group should expect in terms of accommodations and that an extension of at least another 3 weeks should be agreed and announced before the weekend.

In the interests of transparency, I am not intending to apply for a place on the Patient Advisory Panel, as a carer. But if I were, given my commitments, I would certainly demand an extension to the submission date.

I despair that patients and carers have had to expend limited time and energy arguing for something which should have been a given.
 

user9876

Senior Member
Messages
4,556
They need to show that it is a good project. As I pointed out to Stephen Holgate, the problem for me is that the track record so far is that at least some of the people involved do not appear to understand what a good project entails.

They seem to think a good project involves being 'first' or the 'worlds largest' they don't seem to have put much thought into actual content. But they have the career helping headlines and catch phrases.
 

user9876

Senior Member
Messages
4,556
If this project and the patient orgs that are involved in it seeks to retain an ounce of credibility, the first response should be to increase the Patient Advisory application period to at least 4 weeks.

Its not just the time. They are unclear about what is expected. For example, they say meetings will probably be virtual but that is a critical issue in participating. They seem to suggest a small number of meetings with additional adhoc ones. This suggests long meetings which again shows little knowledge or ability help PWME take part.

Then what do they want from an advisory committee are they after patients who can help them understand the disease they are going to study. Or are they after academic reviewers (which is more like they have written the points).

Their statements also suggests they don't want people who will pull apart their methodology even if it is dodgy as they will see that as 'unconstructive'. It is actually constructive to pull things apart especially in the early stages so that the research is solid and not a waste of money. So warning people off this initially seems odd. It shows a lack of understanding of patients concerns over the poor science that Holgate has been keen to promote.
 
Messages
71
Location
London, UK
So they are using the FITNET child advisory group, the same group which decided it was OK for Crawley to say she was using the NICE entry criteria for FITNET even though she wasn't. (She got rid of the requirement for PEM!) The same advisory group which also decided it was OK for kids on the activity management 'control' arm to be encouraged to increase their activity by 10-20% a week up to eight hours per day.

I can't say I am encouraged.
Yes the child arm of MEGA is a totally lost cause as it's just going to be an Esther Crawley vanity project. And by the shambolic way this latest anouncemt has been handled I think the adult patient arm of MEGA seems doomed too
 

Solstice

Senior Member
Messages
641
Its not just the time. They are unclear about what is expected. For example, they say meetings will probably be virtual but that is a critical issue in participating. They seem to suggest a small number of meetings with additional adhoc ones. This suggests long meetings which again shows little knowledge or ability help PWME take part.

Then what do they want from an advisory committee are they after patients who can help them understand the disease they are going to study. Or are they after academic reviewers (which is more like they have written the points).

Their statements also suggests they don't want people who will pull apart their methodology even if it is dodgy as they will see that as 'unconstructive'. It is actually constructive to pull things apart especially in the early stages so that the research is solid and not a waste of money. So warning people off this initially seems odd. It shows a lack of understanding of patients concerns over the poor science that Holgate has been keen to promote.

Well, lack of understanding or deliberate derailing.
 

snowathlete

Senior Member
Messages
5,374
Location
UK
So we have an arm of a study run by one pediatric ME specialist with no potential alternative opinion from another pediatric ME specialist, and the one pediatric charity involved (again, without an alternative involved) has the same specialist as their adviser! And the pediatric advisory group is not independent from another study the same researcher and charity are doing! I wonder if the pediatric advisory group was formed by the same pediatric charity as well. I would like to know.

If this does not raise CONFLICT OF INTEREST alarm bells with people, then nothing else will. It is an absolute joke this study and the child aspect of it concerns me greatly.
 
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Messages
71
Location
London, UK
I think the fact that they they have chosen to believe that the patient advisory groups can be cobbled totheher in 4 days says a lot about how far removed from any comprehension of this illness they are. Or they are deliberately doing this as they already have their (complaint) 'patient advisory groups' selected and this is just a formality? A bit like when an organisation has already got in mind one of their own employees for a new job vacancy but they advertise it externally because they have to by law, but all along it's been an in-house issue
 
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eafw

Senior Member
Messages
936
Location
UK
However long people are given to apply, they will still be vetted and cherry-picked to be suitably compliant. Expect their facebook, twitter and other internet history to be trawled for any sign of sedition.
 
Messages
2,391
Location
UK
Successful applicants will be selected by scoring by the panel against this specification.
I would be a bit wary of this one ...
  • demonstrate tact and discretion and uphold confidentiality
If not abused then this condition makes good sense. But it could very easily be abused, and used as a muzzle clause to avoid open and honest public debate. I'm not saying it would be, just that it could be.
 
Messages
2,391
Location
UK
If this project and the patient orgs that are involved in it seeks to retain an ounce of credibility, the first response should be to increase the Patient Advisory application period to at least 4 weeks.
Absolutely. Imposing such a sort deadline just smacks of (barely) hidden agenda somehow. For something like this you would normally give people more time, especially vulnerable people. Patients & carers need their chance to discuss, consider and digest. Just feels wrong; like people are not being allowed to think things through properly.
 
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lilpink

Senior Member
Messages
988
Location
UK
This suggests to me that they want to control who gets into the patient advisory group, as it lets them invite patients they want involved while it is open while closing it off nice and quick before others can apply from outside. I really hope that patients in the community apply and if they don't get in post all about their application and how it was handled.

Do we know if any potentially interested groups / patients were given prior notice of this?
 
Messages
87
I find it a little strange that the AYME site has no mention whatsoever on it of MEGA. I thought they might be promoting it.
 
Messages
71
Location
London, UK
Ok so the application form for patient advisory group goes through Afme! So the person I talked to at Afme office today was blatantly lying to me when she said 'Afme are not in any way involved in this process'.
Ok so Afme are doing the vetting and MEA and Charles shepherd are just there to rubber stamp those Afme has chosen for them to 'select' from!!!
The level of subterfuge is mind boggling