Petition: Opposing MEGA

[batteredoldbook]

I am terribly down today. Bad news, I feel, on the MEGA front. Like Pace it may already be a 'done deal'. We do well everyone. Take super care of yourselves. #pwme

 

[Solstice]

I am terribly down today. Bad news, I feel, on the MEGA front. Like Pace it may already be a 'done deal'. We do well everyone. Take super care of yourselves. #pwme

What happened?

 

[JohnM]

I am terribly down today. Bad news, I feel, on the MEGA front. Like Pace it may already be a 'done deal'. We do well everyone. Take super care of yourselves. #pwme

@batteredoldbook
I think you are likely right on the MEGA front, and the silence &/or non-response to valid questions/concerns/criticisms about the MEGA project is deafening.

As of today, there is no MEGA study, and I take comfort in that.

As of today, based on the information available about the funding application for the proposed MEGA study, and as others have noted, no biological research into the causes ME/CFS will be undertaken anytime soon .. biological research is once again relegated to nothing more than an 'aim' for the project, and reliant on gaining future funding. This I do not find comforting.

Your comment appears to indicate that you are taking a well-earned break from here, and elsewhere on the advocacy front? If so, I wish you improved health James, and hope you will feel able to continue to advocate for #pwme in the not too distant future.

 

[batteredoldbook]

What happened?

Received an email response that indicated another person had changed their mind on MEGA. Unfortunately their message didn't give any reason for me to do the same.

 

[batteredoldbook]

@batteredoldbook
I think you are likely right on the MEGA front, and the silence &/or non-response to valid questions/concerns/criticisms about the MEGA project is deafening.

The absence of argument and discourse is a very bad sign in my opinion.

@batteredoldbook
Your comment appears to indicate that you are taking a well-earned break from here, and elsewhere on the advocacy front? If so, I wish you improved health James, and hope you will feel able to continue to advocate for #pwme in the not too distant future.

I am just sad is all. I don't know what I hoped to achieve, but nigh on 700 people read my bit on MEGA https://justpaste.it/10o4c and yet the issues remain, as you say above, unaddressed. As always medicine carries on regardless.

As to advocacy, I am not an M.E advocate. After Professor Coyne's abusive language towards myself and others and broad community acceptance of this, I no longer seek to represent pwme. I am just a pwme with a big gob and ideas above his station in life.

Thank you for your best wishes for my health. That's a nice thing to say.

 

[Jo Best]

I am terribly down today. Bad news, I feel, on the MEGA front. Like Pace it may already be a 'done deal'. We do well everyone. Take super care of yourselves. #pwme

Please don't be down - a majority of people are just saying 'no' to MEGA - and as the Opposing MEGA petition says,

There are genuine opportunities for UK biomedical researchers to get involved in ME/CFS research and to really make a difference to millions of people's lives. It is not a case of 'MEGA or nothing'.

On that point, here is some news of good international collaboration, going on outside the CMRC tent - http://solvecfs.org/metabolic-analy...ic-encephalomyelitischronic-fatigue-syndrome/
The above relates to UK, but is part of this -
http://solvecfs.org/2016-ramsay-award-program-results/

 

[batteredoldbook]

Please don't be down - a majority of people are just saying 'no' to MEGA - and as the Opposing MEGA petition says,
"There are genuine opportunities for UK biomedical researchers to get involved in ME/CFS research and to really make a difference to millions of people's lives. It is not a case of 'MEGA or nothing'."

I agree a majority of people are opposing MEGA. It is because so many people's views are so clearly being ignored that I feel so depressed today.

I know there are other projects out there. But this is not what I would want. As I've said above, I would want everyone in the same room doing science and saving M.E patients' lives. Unfortunately, is increasingly hard to maintain my dream.

 

[Jo Best]

As I've said above, I would want everyone in the same room doing science and saving M.E patients' lives. Unfortunately, is increasingly hard to maintain my dream.

But isn't that what happens at the international conference events such as IIMEC and IACFS and workshops where the researchers get their heads together such as BRMEC and now also EMERG? I know that's all bioscience but it doesn't exclude Psychiatry or Psychology. Leonard Jason wrote this for IIMEC10 for example - http://www.investinme.eu/IIMEC11-news-0902.shtml

 

[Snowdrop]

I am terribly down today. Bad news, I feel, on the MEGA front. Like Pace it may already be a 'done deal'. We do well everyone. Take super care of yourselves. #pwme

We all have days like that. Whether due to the state of research or other things. Hope your tomorrow is a better day.
Meanwhile, while I don't want to go off topic here, may I suggest you have a look at: http://forums.phoenixrising.me/inde...announces-grant-recipients.48235/#post-792754

cheers,
SD

ETA: Then I read down and I think @Jo Best beat me to it with the good news link.

 

[batteredoldbook]

But isn't that what happens at the international conference events such as IIMEC and IACFS and workshops where the researchers get their heads together such as BRMEC and now also EMERG? I know that's all bioscience but it doesn't exclude Psychiatry or Psychology. Leonard Jason wrote this for IIMEC10 for example - http://www.investinme.eu/IIMEC11-news-0902.shtml

You are absolutely right to remind me that broad science is out there, but I guess I want the UK situation fixed. Our opinions are, I think, different on this but I see an open wound between doctors and patients in M.E and another between the research groups.

 

[Countrygirl]

https://spoonseeker.com/2016/12/09/spreading-the-word/

Dr Nigel Speight leaves a comment on Spoonseeker's blog concerning Dr Phil Hammond's latest Private Eye article.

Lets be grateful for the extent to which MD/Phil Hammond has got it right. It is remarkable considering that Bath puts so much emphasis on CBT and GET He doesn’t seem to be aware of the abuse of families by child Protection proceedings – maybe we should try to open a dialogue with him

Actually, CBT is not the “only” therapy shown to be supposedly effective in ME. Immunoglobulin has also been shown to be effective in RCTs, and the York review for the CMO’s report highlighted this, only for any mention of IgG to be omitted from the summary. it is even mentioned in the 2004 Paediatric College guidelines, though discounted then on grounds of “risk from blood products” (in fact the UK uses IgG from the USA, free from CJD)

If it were not for the influence of the psychiatric lobby there would have been further trials of IgG. Of course, the fact that it can work (at least on some people) rather undermines the psychogenic theory

I attach a list of references

And of course there is Rituximab

Nigel Speight

 

[batteredoldbook]

https://spoonseeker.com/2016/12/09/spreading-the-word/
Nigel Speight leaves a comment on Spoonseeker's blog concerning Dr Phil Hammodn's latest Private Eye article.

"Lets be grateful for the extent to which MD/Phil Hammond has got it right. It is remarkable considering that Bath puts so much emphasis on CBT and GET He doesn’t seem to be aware of the abuse of families by child Protection proceedings – maybe we should try to open a dialogue with him"

Hi @Countrygirl, thanks for flagging this message up. I for one would have missed it otherwise.

As I think I mentioned above, this is what I wrote to Dr Phil on Twitter after his article:

"Until you address PACE you've a contradiction: You call it a sleight that M.E due to faulty beliefs but CBT 4 ME based on it!"

I then quoted Pace to prove my point: "According to this model, the symptoms and disability of CFS/ME are perpetuated predominantly by unhelpful illness beliefs (fears) and coping behaviours (avoidance)." PACE - Manual for Therapists COGNITIVE BEHAVIOUR THERAPY for CFS/ME - Burgess/Chalder

The problem here, just like when I spoke to Prof Ponting, is that once a valid contradiction is pointed out, the conversation ends. The bit where people change their minds or go, "Oh my goodness we have to do something about this right now!" is just missing in M.E. People simply carry on as before.

I think Dr Speight wants to nurture what he hopes are the beginnings of change and I do appreciate his kindness towards Dr Phil. The trouble is that the time it takes to convince and wait for all these physicians to come around comes out of *our* time as patients.

M.E patients are funding research, we're treating ourselves, we're supporting each other, we're learning about the disease, we're producing science, strong argument and raising awareness - but this is all so wrong. We are patients. It is wrong for us to be expected to give time and energy that we don't have to support professionals who accept payment and expect deference: while refusing to do their jobs.

It is wrong for pwme to be expected to wait months and *years* for responses and answers to the simplest of questions. Yet this is, in accumulation, where our time goes. And listen: these unanswered questions, these little black holes are where 30 years of my life went. I'm running low on patience for doctors.

@batteredoldbook
20:38 10/12/2016

 

[Jo Best]

https://spoonseeker.com/2016/12/09/spreading-the-word/
Nigel Speight leaves a comment on Spoonseeker's blog concerning Dr Phil Hammodn's latest Private Eye article.

And of course there is Rituximab

On that note, as an example of the point made in the Opposing MEGA petition, and to borrow Jonathan Edward's phrase, that MEGA isn't the only game in town, a bit of festive fun in the fundraising update for the IiMER Rituximab Trial fund - http://www.investinme.org/ce-news-1612-01.shtml

 

[Anne]

Apart from the very problematic issues regarding the central position of Esther Crawley and the use of NHS clinics for patient selection, there are two other major issues with MEGA which I can't get my head around:

1. The budget and the actual scope of the study. We have heard the number £5 million, for 10,000 or 12,000 patients. Now, as @Rose49 says:

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.

With the £5 million budget, will we in fact mostly get a lot of questionnaires done (which will then be processed by Esther Crawley)?

2. We have heard that a very large number of patients is needed for the genetics part of the study. I understand large numbers are needed with these techniques to get a strong enough signal to tell you something about a certain disease. But, I dont see how enrolling 10,000 patients with various fatiguing illlnesses (which will be the case when the NHS clinics are used) will result in a strong signal for actual ME. Wouldn't you need 10,000 patients with actual, CCC-defined ME to get a strong signal which tells you something about ME?

@charles shepherd @Rose49 @Ben Howell @Jonathan Edwards

 

[slysaint]

Apart from the very problematic issues regarding the central position of Esther Crawley and the use of NHS clinics for patient selection, there are two other major issues with MEGA which I can't get my head around:

1. The budget and the actual scope of the study. We have heard the number £5 million, for 10,000 or 12,000 patients. Now, as @Rose49 says:



With the £5 million budget, will we in fact mostly get a lot of questionnaires done (which will then be processed by Esther Crawley)?

2. We have heard that a very large number of patients is needed for the genetics part of the study. I understand large numbers are needed with these techniques to get a strong enough signal to tell you something about a certain disease. But, I dont see how enrolling 10,000 patients with various fatiguing illlnesses (which will be the case when the NHS clinics are used) will result in a strong signal for actual ME. Wouldn't you need 10,000 patients with actual, CCC-defined ME to get a strong signal which tells you something about ME?

@charles shepherd @Rose49 @Ben Howell @Jonathan Edwards

All of the above, just about what everyone has been saying/asking for months; round and round we go.
It seems to make no difference; no real answers to the questions or just ignoring them altogether.
maybe you could try it in Swedish?

 

[trishrhymes]

maybe you could try it in Swedish?

Here's some of what @Anne said in Klingon:

2. vaj nIS SoHvaD yIteb mI' SID genetics je, HaD vIQoypu' maH. nIS yIteb mI' ghaH techniques Suq HoS yap signal vay' Dara' vIHtaHbogh be tlhejnISmo' jIyaj. 'ach chay' ghot'e' 10,000 SID Sar fatigue illlnesses (bogh ghaH case lo'lu'DI' nhs clinics) enrolling neH HoS signal Qo' vIlegh actual wouldn't 10,000 SID je actual bImejnIS, ccc-defined baS signal chongaghpa' HoS Suq vay' Dara' vIHtaHbogh jIH

Feel free to send to Holgate.

Maybe he'll respond to that.

He didn't respond to my letter...

 

[A.B.]

Bait and switch.

The bait is the promise of serious biomedical research.

The switch is when it turns out that MEGA is actually a way for Chalder et. al. to get their hands on 12000 questionnaires from "fatigue" patients. The blood samples may not actually ever be used, as there are no detailed plans for anything.

The MEGA Q/A also repeatedly tells readers that fewer tests than planned may be run as result of budget restrictions, or because the patient advisors say so. Even if the blood samples are used, the result may be disappointing.

With Chalder involved, there's the risk that important symptoms of the illness will be distorted to fit into a BPS narrative, creating confusiong and undermining the value of the work.

Finally, there already is an existing biobank, and interestingly the MEGA Q/A page when asked whether they will make use of it, gave an evasive answer, which probably means no. Is it because this biobank has taken some care in selecting patients that are clearly sick with a serious illness?

 

[batteredoldbook]

Bait and switch.

The bait is the promise of serious biomedical research.

The switch is when it turns out that MEGA is actually a way for Chalder et. al. to get their hands on 12000 questionnaires from "fatigue" patients. The blood samples may not actually ever be used, as there are no detailed plans for anything.

Absolutely. There is a clear and genuine concern from patients here which is being glossed over. M.E patients weren't born yesterday - in fact some of us have been ill for decades.
I think the UK M.E charities involved in MEGA come out looking very badly from this.

 

[AndyPR]

Back on topic

3,067 supporters for OMEGA

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

 

[Anne]

Here's some of what @Anne said in Klingon:

2. vaj nIS SoHvaD yIteb mI' SID genetics je, HaD vIQoypu' maH. nIS yIteb mI' ghaH techniques Suq HoS yap signal vay' Dara' vIHtaHbogh be tlhejnISmo' jIyaj. 'ach chay' ghot'e' 10,000 SID Sar fatigue illlnesses (bogh ghaH case lo'lu'DI' nhs clinics) enrolling neH HoS signal Qo' vIlegh actual wouldn't 10,000 SID je actual bImejnIS, ccc-defined baS signal chongaghpa' HoS Suq vay' Dara' vIHtaHbogh jIH

Feel free to send to Holgate.

Maybe he'll respond to that.

He didn't respond to my letter...

Your letter was EXCELLENT. I really wish he would listen and take heed. And be polite and respond.