charles shepherd
Senior Member
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Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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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.
Co-morbid
A co-morbid condition is one that occurs on top of another illness. For example, co-morbid depression is common among people who have chronic illnesses such as cancer, multiple sclerosis and ME/CFS.
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.
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.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.
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.
We can’t yet answer some of the detailed questions as we have not yet applied for funding nor set up the Patient Advisory Group for adults (the children and young people’s group is an existing group working with the University of Bristol).
Has the study been funded yet?
No. We are planning to apply for funding in 2017 for the first stage of the study, setting up the world’s largest Bioresource of data and samples from ME/CFS patients. Our aim is to create a resource that researchers all over the world can use. We will then apply for further funding for subsequent transcriptomics, metabolomics and other -omics studies, searching for the biological basis to ME/CFS, when the Bioresource is set up.
Working with the NHS and the ME/CFS clinics across the country, and a network of health professionals interested in the condition (the British Association for CFS/ME), the researchers, charities and Patients Advisory Groups will aim to create the interconnectivity needed to deliver MEGA’s objectives.
Patients with ME/CFS will be identified by clinicians in the NHS clinics which use NICE guidance to determine if patients have ME/CFS.
demonstrate a constructive, balanced, and broad view of understanding relating to ME/CFS and the experiences of people with it
consider the research requirements and implications for all study particpants without having a pre-set agenda
have a keen interest in critical evaluation and be able to look at a situation as objectively as possible and from many viewpoints, not purely from one’s own
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.demonstrate a constructive, balanced, and broad view of understanding relating to ME/CFS and the experiences of people with it
consider the research requirements and implications for all study particpants without having a pre-set agenda
have a keen interest in critical evaluation and be able to look at a situation as objectively as possible and from many viewpoints, not purely from one’s own
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.
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 think it likely that the money would be better spent in other ways
How will this study work with/use the existing UK ME/CFS Biobank of tissue samples?
We believe that collaboration is very important, particularly in terms of replication. The MEGA data and samples will be available to other researchers to use. We hope we will be able to test whether results from MEGA are replicated in other studies.
How will the MEGA team make decisions about aspects such as recruitment of study participants and which diagnostic criteria to use?
Decisions about the aims of the study, its design, and the samples, data and information collected, will be taken by the MEGA team, which includes the Patient Advisory Groups along with the scientists and charities. Following costing of the study, we will probably need to review these decisions to match the budget available, or to identify different phases for which we will need to seek additional funding.
We haven’t worked on the details for this but will be asking our Patient Advisory Groups about what they think would be feasible and acceptable given the funding limits and compatibility with the demands on patients.
How much data we collect will depend on what our Patient Advisory Groups say will be acceptable to consenting patients and how much funding we get.
There seems to be some new information in the QA section.
We can’t yet answer some of the detailed questions as we have not yet applied for funding nor set up the Patient Advisory Group for adults (the children and young people’s group is an existing group working with the University of Bristol).
Where Crawley works, which suggests this advisory group is aligned with or controlled by Crawley.
Advisory Group members should meet the following criteria/person specification:
- have the ability to understand the concerns of people with ME/CFS, their families and carers
- demonstrate a constructive, balanced, and broad view of understanding relating to ME/CFS and the experiences of people with it
- have a keen interest in research, health and/or consumer-related issues
- be willing and able to commit the time required to take part in Advisory Group activities and prepare appropriately, including the careful reading of relevant material (which will be provided in advance)
- be able to participate in meetings (which will probably happen virtually), contribute to email discussion and/or teleconference calls. We recognise the impact of the illness may affect ability to participate at times. However, we ask that at the time of application, you anticipate that you will be able to engage as fully as possible. We anticipate that routine meetings will be organised twice a year but it is likely that from time to time, additional meetings will take place or we will ask your views via email or phone call.
- consider the research requirements and implications for all study particpants without having a pre-set agenda
- have a keen interest in critical evaluation and be able to look at a situation as objectively as possible and from many viewpoints, not purely from one’s own
- be willing to challenge and be challenged and to take an active part in meetings whilst also allowing others to play a part
- be able to listen to, read, assimilate information and analyse evidence that is sometimes complex
- demonstrate tact and discretion and uphold confidentiality
Is the MEGA study achievable?
Yes – but only if everyone pulls together.
Hi Jonathan
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…..