Petition: Opposing MEGA

[Jo Best]

Petition Update - https://www.change.org/p/opposing-m...idence-in-mega-research-for-me-cfs/u/18375824

6 NOV 2016 — An excellent new piece has been published by UK charity Invest in ME Research - http://www.investinme.org/IIME-Newslet-1611-01.shtml

Extract -

When the MEGA study (M.E./CFS Epidemiology and Genomics Alliance) was announced by the CMRC collaborative some people wished to believe that a change had occurred - that, after a lifetime of wasted opportunity, where the PACE trial had eventually been pulled apart and shown to be the flawed and tawdry #nullfield research that it is, then a new age of research would begin where patients could begin to trust what was being put forward.

This was despite the misgivings about the MEGA project from some patients who were street-wise to the machinations of those influencing research policy, as detailed in the OMEGA petition [1]. IiMER expressed our views [2].

The recent days’ orchestrated media blitz about another doubtful research project called FITNET-NHS (Fatigue In Teenagers on the interNET) [3], led by Professor Esther Crawley at Bristol University, has surely put the final nail in the coffin of any hope of rational science and clear vision from the Science Media Centre-assisted forces who paint ME to be an illness maintained by the young person’s behaviour which can be corrected via CBT, GET or even a pyramid business dressed up to be a treatment."

Read the full article here -
http://www.investinme.org/IIME-Newslet-1611-01.shtml

The full support of the UK Science Media Centre for the CFS/ME Research Collaborative (CMRC) bio-psycho-social agenda, and their willingness to cast patients as villains beggars belief really. It sounds more like Science Fiction, and people pointing out such collusion are often labelled 'conspiracy theorists', but there's no secrecy about it, here it is in their own words in their 3-year report published in 2013, the year the CMRC (the latest incarnation of MRC ME/CFS Expert Group) was formed. There are several references throughout - http://www.sciencemediacentre.org/w...arch-function-at-the-Science-Media-Centre.pdf

Time to end this travesty of science and decency.

Sign the Opposing MEGA counter-petition here -
https://www.change.org/p/opposing-mega-a-vote-of-no-confidence-in-mega-research-for-me-cfs

Please keep sharing to help raise awareness of what's really going on in UK behind the headlines of mainstream media. Thank you.

 

[batteredoldbook]

"Time to end this travesty of science and decency."

Agree strongly. Prof. Holgate's support for Fitnet is not good judgement imo. Pwme and ME charities should forgo the MEGAbucks and instead force CMRC to deal with reality. In reality there is a serious methodological problem with pace. It is an unsafe foundation to build upon.

 

[Janet Dafoe]

Ron Davis and his team doing the Severely Ill Patients Big Data Study of 20 patients are spending about $100,000 per patient on the extensive testing they are doing. The MEGA study has a pretty extensive list of things they are planning to do, and they plan to test 10,000 patients. If they did all the tests that OMF team is doing it would cost them 1 billion dollars (and more for controls). It seems unlikely that they can get that much money. So how much testing are they really going to do? It's all so vague it's hard to tell what they are doing.

 

[batteredoldbook]

British medical research is a negative contribution. Patients must have already had to put in £5M pounds worth of effort just to compensate for PACE.

 

[A.B.]

Ron Davis and his team doing the Severely Ill Patients Big Data Study of 20 patients are spending about $100,000 per patient

Wow, I heard it was "only" 20000.

 

[trishrhymes]

Ron Davis and his team doing the Severely Ill Patients Big Data Study of 20 patients are spending about $100,000 per patient on the extensive testing they are doing. The MEGA study has a pretty extensive list of things they are planning to do, and they plan to test 10,000 patients. If they did all the tests that OMF team is doing it would cost them 1 billion dollars (and more for controls). It seems unlikely that they can get that much money. So how much testing are they really going to do? It's all so vague it's hard to tell what they are doing.

Thanks, I'm so glad there is real science happening. It has been so upsetting here in the UK this last week with Crawley pouring her dangerous pseudoscience all over our media. You have voiced my fear over MEGA. With Crawley as their ME 'expert' I think it will turn into a decade or more of questionnaire based data collection she will feel free to misuse, and running out of money before they can do anything but minimal blood tests which show nothing. That, on top of 6 years of FITNET should see her nicely through the rest of her career.
I and thousands of others are relying on the true scientists to break through this wall of psychobabble with genuine tests and treatments.

 

[eafw]

Ron Davis and his team doing the Severely Ill Patients Big Data Study of 20 patients are spending about $100,000 per patient on the extensive testing they are doing. The MEGA study has a pretty extensive list of things they are planning to do, and they plan to test 10,000 patients. If they did all the tests that OMF team is doing it would cost them 1 billion dollars (and more for controls). It seems unlikely that they can get that much money. So how much testing are they really going to do? It's all so vague it's hard to tell what they are doing.

$100,000 per person seems a lot, is there a breakdown of this ? I'm wondering if some of the discrepancy is US pricing, and some is the way the NHS and Universities are set up here - it's a very different infrastructure, and should be a big advantage in large scale studies. The potential is there for them to do something good (without spending anything like £100K per person)

 

[trishrhymes]

$100,000 per person seems a lot, is there a breakdown of this ? I'm wondering if some of the discrepancy is US pricing, and some is the way the NHS and Universities are set up here - it's a very different infrastructure, and should be a big advantage in large scale studies. The potential is there for them to do something good (without spending anything like £100K per person)

I don't think much of the sophisticated kind of testing Ron Davis and his team are doing would be possible in NHS pathology labs, even if the overstretched NHS had the spare capacity to do it. In the UK like everywhere else, the kind of tests they are doing are likely to take place in University departments or commercial labs. Either way the study would have to pay the commercially going rate.

I agree there could be economies of scale for at least some of the tests, but I think we have to conclude that either MEGA is planning a very much narrower range of tests, or it's all pie in the sky and they will use up the £9 million or whatever they get just getting the 12000 samples and questionnaires, and starting to analyse the questionnaires, then discover they can't get enough funding to go any further. I imagine this taking at least a decade. That should take the likes of Crawley safely to the end of her career without anything biological being found to disturb her psychobabble.

Sorry to be so cynical. I'd love to see a financial plan for MEGA (if they have one) showing exactly how they intend to spend the money if they get it.

Does anyone know whether there is a financial budget plan for the study? There must surely be one if they are getting ready to put in a bid for funding. We need to see it.

 

[eafw]

In the UK like everywhere else, the kind of tests they are doing are likely to take place in University departments or commercial labs. Either way the study would have to pay the commercially going rate.

I agree there could be economies of scale for at least some of the tests, but I think we have to conclude that either MEGA is planning a very much narrower range of tests, or it's all pie in the sky and they will use up the £9 million or whatever they get just getting the 12000 samples and questionnaires, and starting to analyse the questionnaires, then discover they can't get enough funding to go any further. I imagine this taking at least a decade. That should take the likes of Crawley safely to the end of her career without anything biological being found to disturb her psychobabble.

They would use the University labs of the researchers that are coming into the study surely ? Maybe some tests would be farmed out, but it's not just economy of scale it's that the machines and labs are already running - marginal costs not setting up from square one.

In theory they could get it organised in a reasonable budget ...in theory. In practice is a whole different matter but it does boil down to the way they approach it.

It will take years, even if done properly we shouldn't be looking at it as a short term fix or a clinical study. Though again, with a proper approach (eg start with targetted severe and maybe biobank) we could get some initial results out sooner which could point the way for others and give a grounding as the trial expands in numbers.

 

[Janet Dafoe]

$100,000 per person seems a lot, is there a breakdown of this ? I'm wondering if some of the discrepancy is US pricing, and some is the way the NHS and Universities are set up here - it's a very different infrastructure, and should be a big advantage in large scale studies. The potential is there for them to do something good (without spending anything like £100K per person)

Here is a list of the tests
http://www.openmedicinefoundation.org/phase-i-list-of-tests/

 

[trishrhymes]

My daughter who has ME has just become the 2500th person to sign.

 

[Jo Best]

I'm sorry your daughter has this awful illness Trish. 2515 now - https://www.change.org/p/opposing-mega-a-vote-of-no-confidence-in-mega-research-for-me-cfs

My daughter who has ME has just become the 2500th person to sign.

 

[trishrhymes]

I'm sorry your daughter has this awful illness Trish. 2515 now - https://www.change.org/p/opposing-mega-a-vote-of-no-confidence-in-mega-research-for-me-cfs

Thanks, Jo, I've had it 27 years, she's had it 19 years, both housebound. We muddle along with some paid help. Not fun. I'd do anything to see her well.

 

[edn]

I see absolutely no reason for a psychiatric specialist to be involved. Do studies on the biological basis for cancer have to include a psychiatric specialist in order to avoid the charge of 'biomedical bias'?

The rather obvious difference is that no-one is proposing the cancer is a somatoform illness. There are still people proposing that for CFS/ME and being taken seriously. Having a psychiatrist on the team who can say "I've looked at the biomedical evidence and it's definitely not a somatoform disorder" is powerful ammunition to stop them. No psychiatrist on the team means that those proposing a somatoform disorder will always be able to say that the team had no specialists who could properly ascertain whether any biological findings were causative or the result of a psychological disorder.

 

[JoanDublin]

The rather obvious difference is that no-one is proposing the cancer is a somatoform illness. There are still people proposing that for CFS/ME and being taken seriously. Having a psychiatrist on the team who can say "I've looked at the biomedical evidence and it's definitely not a somatoform disorder" is powerful ammunition to stop them. No psychiatrist on the team means that those proposing a somatoform disorder will always be able to say that the team had no specialists who could properly ascertain whether any biological findings were causative or the result of a psychological disorder.

Sorry but that's just bull. Those proposing a somatoform disorder can kiss my ass. They've had a long enough run at this and it's time to get off the pot. There is NO room for them at the table of science and biology so let them say what they want. They can create their own echo chamber for all I care

 

[Snowdrop]

If biological findings for other illnesses do not necessitate psychiatry screaming foul I don't see how just because somatoform has been suggested for this disease it needs psychiatry's blessing. Somatoform does not require disproving.

Only psychiatry thinks so because they cannot prove it to be true.

 

[BurnA]

The rather obvious difference is that no-one is proposing the cancer is a somatoform illness. There are still people proposing that for CFS/ME and being taken seriously. Having a psychiatrist on the team who can say "I've looked at the biomedical evidence and it's definitely not a somatoform disorder" is powerful ammunition to stop them.

Any psychiatrist who wants, can look at the scientific evidence right now and say it's not a somatoform disorder.
The point is, there are none so blind as those who will not see.

 

[Sean]

I signed.

With a heavy heart, and being aware of the risk of this choice, I can't support MEGA any more in its current version. The BPS school clearly has too much influence.

Enough is enough. No more sops to that malignant cult. I don't believe for a second that they have changed their fundamentalist beliefs about ME/CFS (or MUS more broadly). All they are doing is engaging in ever more dishonest spin about their real beliefs and the evidence base, just to cling to power and avoid accountability. It is so obviously false that it is insulting in the extreme to demand patients accept it at face value, meekly submit to ever more of this savagery, and then be grateful for it.

Nah, not good enough. Not even close.

If the BPS school is removed from any further involvement in MEGA, including choice of selection criteria and outcome measures, and the biomedical researchers allowed to get on with a proper objective assessment of the disease, then I will again support MEGA.

I really do want MEGA to succeed. But I cannot see that happening while the cult is still so closely involved in it. They have to be removed from the project.

 

[AndyPR]

And OMEGA now has more supporters, 2553, than MEGA had, and within a shorter time period.

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

 

[Sean]

Further, I though the whole point of the MEGA project was an independent objective assessment of the biological aspects of the disease, to start redressing the gross imbalance left from the unrelenting exploitative psychologising we have been subject to for the last three decades.

Maybe I didn't pay enough attention to the fine print.