Petition: Opposing MEGA

[sue la-la]

i found this on the interwebs ...

 

[Dx Revision Watch]

I guess the MEGA application to Wellcome for funding will be submitted within the next week or so.

I guess the existing UK ME biobank application to Wellcome will be going to the same fund, so they will be directly competing for funds.

I guess the MEGA petition has already been sent to Wellcome in support of the MEGA applicaton.

I guess the founders of OMEGA will also be submitting their petition to Wellcome in good time for it to have maximum effect.

I guess the OMEGA founders may also tell Wellcome that the existing UK ME biobank is fully supported by the ME patient community.

That's an awful lot of guessing.

It would be nice to have a confirmation or denial of some of my guesses.

Yes, I'd be interested in an update on where the petition is being sent.

The submission for funding will have presumably gone in by now.

 

[charles shepherd]

I am not involved with either petition (MEGA or OMEGA) - so have no idea as to what is happening with the petitions

My main effort from now on will be to assist with and support the application from the ME/CFS Biobank

This application for funding has now been submitted to Wellcome Trust

I don't have an update on progress with the MEGA application and am not involved with the submission

And having done my bit in helping to select people to be members of the MEGA PAG I am no longer involved with this source of patient input to MEGA

CS

 

[A.B.]

My main effort from now on will be to assist with and support the application from the ME/CFS Biobank

This application for funding has now been submitted to Wellcome Trust

Is this to ensure the continued existence of the biobank, expand it, or conduct studies with the samples?

 

[trishrhymes]

I am not involved with either petition (MEGA or OMEGA) - so have no idea as to what is happening with the petitions

My main effort from now on will be to assist with and support the application from the ME/CFS Biobank

This application for funding has now been submitted to Wellcome Trust

I don't have an update on progress with the MEGA application and am not involved with the submission

And having done my bit in helping to select people to be members of the MEGA PAG I am no longer involved with this source of patient input to MEGA

CS

@charles shepherd

So pleased to hear your efforts are fully with the ME/CFS biobank. I understand you've been instrumental in it from the start, and I thank you for that. Good luck with it. I do hope the application is successful.

Can you clarify whether this application will be in direct competition with the MEGA application - is it to the same fund?

I'm wondering what the response was to the initial MEA consultation about MEGA flagged up in ME Essentials before Christmas. I remember there was talk back then of consulting members again once we know the details of the MEGA project. Has this been shelved?

If the two bodies are indeed competing for funding from the same source, I can't see how the MEA could possibly support MEGA or have anything further to do with it.

 

[AndyPR]

I was planning on sending my feedback on MEGA to the MEA today but, while reviewing what I had typed out, my wife managed to delete my draft email....and, sadly, with no chance of recovering it

 

[Esther12]

I was planning on sending my feedback on MEGA to the MEA today but, while reviewing what I had typed out, my wife managed to delete my draft email....and, sadly, with no chance of recovering it

Nightmare - best wishes to you and your unfortunate wife! On-line e-mail can be so tempremental, and yet I still keep using it for drafting things. Maybe your experience of writing a first draft will aid a speedy re-write?

 

[charles shepherd]

Is this to ensure the continued existence of the biobank, expand it, or conduct studies with the samples?

The main aim of the application from the ME/CFS Biobank is to try and ensure medum to long term funding for the Biobank - so that we can guarantee continuity of the existing work and also increase the number and range of blood samples that are now being made available to the ME/CFS research community

Funding, which comes to around £45,000 per annum, is currently provided by the MEA Ramsay Research Fund.

ME/CFS Biobank:
http://cureme.lshtm.ac.uk

 

[charles shepherd]

@charles shepherd

So pleased to hear your efforts are fully with the ME/CFS biobank. I understand you've been instrumental in it from the start, and I thank you for that. Good luck with it. I do hope the application is successful.

Can you clarify whether this application will be in direct competition with the MEGA application - is it to the same fund?

I'm wondering what the response was to the initial MEA consultation about MEGA flagged up in ME Essentials before Christmas. I remember there was talk back then of consulting members again once we know the details of the MEGA project. Has this been shelved?

If the two bodies are indeed competing for funding from the same source, I can't see how the MEA could possibly support MEGA or have anything further to do with it.

There is an element of competition here - although there are clearly some very significant differences between what the two applications involve

The ME Biobank takes the view that competition is generally healthy when it comes to medical research funding

The MEA position on MEGA remains exactly the same - we will make a decision as to whether we are going to endorse and support the MEGA study when we have ALL the key information relating to concerns and questions about patient selection, diagnostic criteria, inclusion of people with severe ME/CFS etc etc.

We will also take note of what the MEGA PAG (Patient Advisory Group) are saying.

All this is still some way away…….

We didn't actually receive many letters and emails about the MEGA study following the article in ME Essential and trustees are still in the process of discussing the subject of on-going consultation with MEA members.

I will be writing another article on MEGA for the February issue of the MEA magazine

 

[trishrhymes]

Thanks for the update @charles shepherd

 

[Cheshire]

The list of the PAG members has just been published:
http://www.megaresearch.me.uk/mega-team/patient-advisory-group/

 

[AndyPR]

The list of the PAG members has just been published:
http://www.megaresearch.me.uk/mega-team/patient-advisory-group/

Good luck to them. They have my respect and best wishes for putting themselves forward into that role, I sincerely hope that they prove me wrong and that they are able to positively affect MEGA.

 

[Esther12]

The most important thing is to push for properly informed consent, so potentiual participants are provided information about the problems with Crawley's work and the way that she has behaved before they agree to hand over samples and personal information to her. Best of luck to those pushing to try to turn MEGA into something respectable.

 

[AndyPR]

3,110 supporters
https://www.change.org/p/opposing-mega-a-vote-of-no-confidence-in-mega-research-for-me-cfs

 

[trishrhymes]

3,110 supporters
https://www.change.org/p/opposing-mega-a-vote-of-no-confidence-in-mega-research-for-me-cfs

Does anyone know whether the OMEGA petition has been sent to Wellcome to be seen alongside the MEGA petition and grant application?

 

[AndyPR]

Does anyone know whether the OMEGA petition has been sent to Wellcome to be seen alongside the MEGA petition and grant application?

I don't whether they have or not, although I would guess that if they had then they would have posted about doing so? Mind you, I can well imagine though that there would be nothing to compel Wellcome to view it alongside MEGA .

 

[lilpink]

Something of an indictment apropos how well the main UK ME charities are at informing members of what's what in ME research :
"We get the journals of the main charities formed to support sufferers and I read them. I know a lot about ME. "

https://www.amazon.co.uk/gp/custome...f=cm_cr_arp_d_rvw_ttl?ie=UTF8&ASIN=0701189266

EDIT: to be clear ..there are other comments on the tail of the one flagged here if you scroll below the link. Some, like that from 'QED', are especially useful.

 

[lilpink]

Possibly not posting this in quite the right thread (apols I find navigating PR confusing), but
QED has made a very detailed & useful reply to another reviewer of O'Sullivan's awful book which is well worth visiting. I'll post it in full here... link below:

"YOU ARE NOT ALONE. I'm assuming you're a woman? 'Medically unexplained symptoms' / 'MUS' (of which dysfunctional/functional neurological disorder is just one category - others include ME, fibromyalgia, chronic pelvic pain) represents gender discrimination par excellence.....up to 4 times as many women as men are given this diagnosis - see Medically Unexplained Symptoms (MUS) Project implementation report by NHS Commissioning Support for London March 2011. GPs are taught that around 20% of primary consultations will (so should?) result in a diagnostic outcome of MUS, and a figure of up to a quarter of patients having MUS-related problems has been touted by the NHS. It represents the very worst dumbing down of medicine in order to save the NHS loads of money. Make no mistake, this is a carefully constructed government plan, concocted together with the Institute of Psychiatry IoP, (see PRINCE Trials at the IoP now underway) to limit secondary referrals and investigations and so cut hospital costs and staff (it HAS all been costed by Martin Knapp of LSE). One aim is to dramatically reduce or eliminate the estimated (up to) 50% of outpatient appointments that they claim are as a result of MUS. Just take a moment to think about the ramifications of that. The plan involves labelling patients (mainly women) as mentally ill/deficient and only offering them CBT therapy at a lot less cost than investigating them properly. Many NHS trusts/ CCGs are at this very moment using tax-payers money to fund extra psychotherapists in primary care to stop patients from being referred to secondary care.....while at the same time planning closures of Accident and Emergency units, an excellent child cardiac service, and even whole hospitals. This is privatization by the back door. No doubt you've wondered whether you could get any better care by going privately...perhaps you've even costed it or already gone down that route? That's exactly what they want.

So how can these caring, saintly, health care professionals that we keep hearing about be involved in such treachery? Good question. Well to be fair to GPs they have very little time in a consultation to take a proper history.....a source of great frustration to them. In the past the fall-back has been that if they weren't sure whether something was serious they could refer on for a more specialist opinion. But no doubt the government/NHS has been breathing down their necks for a considerable time about 'wasting' NHS resources in this way, pressure that they could well do without. So now they are being enticed with CPD credits to go to MUS conferences, workshops and seminars to be brainwashed into thinking these awkward diagnostic problems are actually the result of somatising mentally ill patients.....nothing to do with their own constraints or limitations as doctors - whether through time, money, knowledge or research funding limitations. NB This is put brilliantly by Dr David Healy on his website - https://davidhealy.org/surrender/ - although I would perhaps try to be a little more understanding than him of doctors' and especially GPs' predicament/s. BUT hospital consultants who practice this lazy and discriminatory 'medicine', and diagnose their patients with MUS rather than, for example, recommending referral elsewhere, will only have themselves to blame when their departments are closing around them.

I would strongly urge people to campaign for 'NO PSYCHIATRIC OR 'MENTAL HEALTH' DIAGNOSIS WITHOUT FULL SPECIALIST (consultant psychiatrist) PSYCHIATRIC ASSESSMENT' - this surely is what psychiatrists themselves should be pressing for and it would help prevent MUS being used by government and health economists as a cheap waste basket mental health diagnosis to deny people proper biomedical care.

It is women who are bearing the brunt....... partly because women are more likely to seek medical help for their health concerns.....not because they are neurotic but because they are (appropriately) more health-vigilant then men (a cause for concern with respect to men's health) ......partly because women have more complex problems arising from childbirth, hormone fluctuations of periods and menopause, from often doing more than their fair share of childrearing and housework responsibilities, and from simply having a different physiology to men. They are thus far more likely to have several accumulated health problems superimposed on each other, the symptoms of which need unpicking. And partly, of course, because discrimination still exists in this white male-dominated profession. The psychs responsible for this deplorable MUS theory maintain that patients presenting with more than a few symptoms MUST, by definition, have MUS. How are patients to know which of their symptoms are relevant to a particular condition or disease without listing them all? Unless of course they can do their own research online and become as expert as the doctors themselves.....but that's another indicator of mental imbalance apparently. GROAN.

You could contact your MP and see if they can help you, (more likely if an opposition MP), that's probably easier than going down the hospital complaint route which can be very time and energy-consuming and likely to get you nowhere. Although they couldn't get involved in your specific case, you could perhaps think about joining the Women's Equality Party who are pressing for Equality in Healthcare as a key objective...... or perhaps let them know about your dreadful situation...... other sufferers have found them very approachable.

I'll just end by saying thanks very much for your delightful description of this book, so delicately put!"

https://www.amazon.co.uk/gp/custome...=cm_cr_othr_d_rvw_ttl?ie=UTF8&ASIN=0701189266

 

[Jo Best]

Petition update 'Letter to Mainstream Research Funders'
- https://www.change.org/p/opposing-m...idence-in-mega-research-for-me-cfs/u/19240607

 

[JoanDublin]

Petition update 'Letter to Mainstream Research Funders'
- https://www.change.org/p/opposing-m...idence-in-mega-research-for-me-cfs/u/19240607

Great letter and great to have this on public record