Discussion in 'General ME/CFS Discussion' started by charles shepherd, Nov 30, 2016.
This is the new website for the MEGA study:
Other than a fresh look, the main feature of this website appears to be the impossibility to post public comments. Unlike on this project's page on petition.org, no one can see that the patient community has a number of concerns and reservations about this.
Again we see researchers responding to criticism with obscurantism and evasive answers.
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.
Professor Stephen Holgate has accepterd an invitation from the Countess of Mar to come and speak about the MEGA study to the Forward ME Group of ME/CFS charities at the House of Lords on Wednesday 7th December
There will also be an opportunity for charity representatives to ask questions during this meeting
Forward ME Group:
Forward ME Group Minutes archive:
Forward ME Group membership:
This says absolutely nothing.
Of course it would be nice to have a big study of lots of things in lots of patients but it needs to be done carefully and it will cost a vast amount of money to do that. I think it likely that the money would be better spent in other ways. We already have a Biobank resource and a method for recruiting cohorts - which could be improved but is a good start. I strongly suspect that several metabolomic and genetic and other projects are already being set up with reasonable sized samples elsewhere in the UK. The site starts with a cringe-making reference to elephants in bed. MEGA is beginning to seem increasingly like a white elephant.
MEGA is not 'the first of its kind' - because it does not yet exist. We are not even told what it is going to study.
This so-called semi-MRC outfit with so-called brilliant scientists needs to wake up to the fact that the world is not impressed. The Emperor has no clothes I am afraid. There is still time to go and put some on but this sort of mode of communication, treating everyone like idiots, is not going to get us anywhere.
How can the MEGA Board justify such a short (6 day) Deadline for applications to be on the Advisory Board? They have created unreasonable obstacles to (Disabled) sick ME sufferers being able to make an application in such a short time.
MEGA patient advisory group:http://www.megaresearch.me.uk/get-involved/
How to apply (please note that AfME are administering the applications but are not involved in the selection process)
Please complete the application form and return it to Action for M.E., who are administering the recruitment while the MEGA team sets up its communications channels.
The closing date for applications is 9am 6 December 2016. Applications will be considered by a panel consisting of representatives from the ME Association and ME Research UK and a representative from the MEGA team, Prof Paul Little.
Please ensure that you state fully how you meet the criteria/person specification in your application. Successful applicants will be selected by scoring by the panel against this specification.
Glancing at the glossary, they really don't seem to get it:
I know that your views on this study are very critical and The MEA has a lot of concerns and questions from 'inside the tent' at the CMRC
I suspect that the answer will be no but my personal view is that we really do need to have people like yourself on the advisory group while the planning of this complex, lengthy and very costly study is taking place
If you don't like the end product, you can then opt out and say that you cannot support or endorse it in any way
This is the position that we are going to take - question, criticise where necessary, take advice from other scientists working in these areas etc etc
And if the end product is not satisfactory then the MEA will not support or endorse the MEGA study…..
Dr Shepherd, do you believe that five days is a reasonable amount of time, because I and others don't. Patients that suffer fatigue and cognitive issues would deserve a longer amount of time in my opinion.
I agree with you and I took the position that this is a very short deadline for people to submit applications
I will see if the others will agree to an extension and I will also raise this with Professor Holgate when he comes to the House of Lords meeting next week
There seems to be some new information in the QA section.
Where Crawley works, which suggests this advisory group is aligned with or controlled by Crawley.
So it turns out that MEGA is first and foremost a respository for blood samples and mental health questionnaires.
And the QA repeatedly stresses the point that patient advisors will be able to restrict what tests are actually performed.
Why not use the existing biobank?
BACME seems to be a lobby group for CBT therapists and researchers. Last time I read about it, the head of this organization was none other than Crawley.
The diagnostic criteria are almost as bad as the Oxford criteria:
4 months of unexplained fatigue in an adult, 3 in children. The diagnosis should be reconsidered if there is no PEM, cognitive difficulties, pain or sleep disturbance.
I suspect that thanks due to the tireless efforts to portrait CFS as psychosomatic, docs in the NHS may not care about details of case definitions any way.
If you're critical of CBT/GET then you're probably wasting your time applying for a position as patient advisor.
Three of the requirements for patient advisors:
Seems designed to filter individuals who might object to a psychiatric agenda.
The MEGA Board once again demonstrates its disturbing lack of understanding of the disabilities imposed by ME. They have created unreasonable obstacles to sick ME sufferers, most being unable to make an application in such a short time.
The 6 day deadline to apply to be on the Advisory Board could possibly be challenged on Disability Discrimination grounds. Good and Services ..... purveyors are supposed to take steps to make services accessible to people with disabilities. Not sure if MEGA would come under the Act in Law.
Now why can't they ask the researchers to do the same?
More like 5 days as applications must be received by '9am December 6th' . Where's that rolled eyes emoticon?
You might not have meant it this way, but this isn't a pot that can be spent on mecfs research in other ways - this is a grant application to Wellcome against allcomers from every illness. All other mecfs researchers can continue to apply for projects purusing whatever they think is a better way to pursue research. And I hope they will, but I think people need to be clear this isn't 'taking money away' from alternative projects. Wellcome have never funded a mecfs project before, MEGA are trying to tap into new funds and a new funder.
I agree the deadline is unreasonably tight, given they are recruiting patients. Even if people are well enough to contribute, they may have a temporary flare that makes applying now impossible.
No indication here that they will use the existing biobank. Some PR talk about collaboration.
There are several parapgraphs where they warn us that they may not actually gather the data / do the tests they said they would.
The Q&A reminds me of a PACE FAQ. It seems designed to manage those who did not have any questions, rather than respond to those who did. Nothing about Crawley's involvement or the problems with her work.
It does sound like AYME and Crawley control the childrens 'patient advisory group'. The same people who thought a Lightning Process trial would be a good idea.
I had hoped the CMRC would be about increasing funding and leaving behind people like Crawley. Instead it seems to be about empowering them and inserting them into even potentially useful research.
Does anyone think Crawley fulfills these criteria? Why is she included in MEGA?:
So that would be a 'no' then.
That sounds like an invitation to join the advisory group, although maybe it is just an invitation to apply to join.
I am sorry to say that I am baffled by the whole set up here, Charles. In the past you have been very much someone who sticks to the rules, in a way that I respect because it is often the best route in the long term. However, the CMRC and MEGA seem to have no concern for the rules. It is quite unclear whether this is a group of people representing a funding body (MRC) or representing some ad hoc body wanting to commission research (CMRC) or a group of researchers applying for funding. There is no way that I would want to join a grouping that seems to ride roughshod over rules designed to avoid conflicts of interest. The more I see from this outfit the more it seems to me that it is a group of people who think they have some special entitlement within medical science to dictate the agenda. It may be that they do - the system is like that - but they shouldn't.
As you know there are excellent ME researchers who are not part of this project who could well be if there were not personal political agendas. I cannot take the project seriously in its present form. Even without the politics my experience if this sort of grandiose proposal in the past has been that it generates a lemon. Good research is done by individuals with good ideas, very often on a shoestring.
I have made some practical points about study design. I am very happy to have a dialogue about those. But so far I have received no substantive reply from anyone at MEGA other than your kind and patient self, and some comments from Chris Ponting that I was not entirely convinced by.
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