Petition: Opposing MEGA

[potbatch]

Again, the issue here boils down to respect. I think pwme deserve much better science than Pace delivered and we deserve the respect of straight responses to the issues we raise with researchers, with medicine, the CMRC and with the M.E charities. I consider Prof Holgate's recent response to 200 pwme highly unsatisfactory in regard to the latter.

I made this reply to Prof Holgate (including some observations on FITNET). Haven't heard back from him yet.
https://spoonseeker.com/2016/11/28/fitnet-fiction/

Dear Professor Holgate
Thank you for your response to our email. I have not been able to consult with all the 218 people who signed the original communication but those whom I have been in touch with have expressed considerable disappointment that you did not attempt to address the specific issues we raised in our letter.
However, I await the new website with interest and hope that the FAQ section will at least deal with the two main issues we mentioned in relation to MEGA:

• the recruitment of a representative sample of patients (including the severely affected) who have the cardinal ME symptom of post-exertional malaise, and
• the suitability of Professor Crawley to take charge of such recruitment given the highly imprecise nature of her previous work in this field

Potbatch aka Spoonseeker

 

[Jan]

It's ridiculous, once again, if it involved drugs used instead of exercise, I imagine an external investigation would be launched. Again, it matters not if it's exercise that harms us.

@charles shepherd has the MEA contacted QMUL? IiME?

Once again I presume it's down to us sick individuals to complain ourselves.

 

[slysaint]

Whilst the Medical Research Council (MRC) was one of the funders of the
PACE trial

As the DWP was another, shouldn't the govt be demanding to know.?......(we know the answer to that one). Similarly, QMUL wasting £200+K fighting in the courts in defence of PACE should have at least raised some concern.
Hopefully Kelvin Hopkins has some follow up questions for round two.

 

[Dx Revision Watch]

https://twitter.com/i/web/status/803947512965005312

http://www.megaresearch.me.uk/

Q & A

http://www.megaresearch.me.uk/qanda/

(...)

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.


* http://www.bacme.info/

Site under maintenance
The new BACME website will be ready in November 2016. Thank you for your patience.

 

[Dx Revision Watch]

http://www.megaresearch.me.uk/get-involved/

Patient Advisory Group

(...)

How to apply

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.

Note: that is just 6 days away.

 

[Wildcat]

"Note: that is just 6 days away."


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 being able 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.


.

 

[trishrhymes]

There's a place on the web site for sending them a message. I've just sent one saying they must do the following (with a brief explanation of each):

Use internationally recognised research definition
Use the existing biobank
Sample from GP's not fatigue clinics
Get rid of Crawley
Use Tymes, not Bristol to advise on children.

I then thought about whether to apply to be on the patient advisory panel. I fit all the criteria bar one - I must be open minded and not have expressed fixed opinions about the study.

I guess the message I just sent them neatly excludes me.

That and the long letter I sent Holgate. Which he has ignored.

Can't say I'm all that disappointed. I don't have the energy for bashing my head against brick walls.

 

[Jo Best]

I'm still going through their (MEGA) new site but am distinctly unimpressed so far.
The Opposing MEGA petition got more signatures than MEGA in the same number of days but is still open.
https://opposingmega.wordpress.com/...g-mega-has-more-support-than-mega-in-35-days/

 

[Cinders66]

The patient group must not have fixed views and are assessed/vetted by the PRO mega charities , so it's a group of yes men? The kids patient group is affiliated with ECs Bristol,

It was too long for me to read it all. Are they using existing bio bank samples and the including severe plus out reaching the more impacted/entrenched who aren't bothering with CBt fatigue clinics?

I love how they've decided there's an urgent need for this type study after talking about it for 8 years

It seems NICE are still the criteria? What was all that IOM talk then?

Scientists out there -it seems they're starting with recruiting sample size and genetics , is this massively useful in direct impact on finding treatments? (obviously long suffering patients want meaningful treatment asap) how along will that take? and how long before they get onto the omics stuff which seems to be second round? Won't the metebolomics question be answered by then?

 

[slysaint]

"Additionally, there will be a children and young people’s advisory group, which is an existing group working with the University of Bristol."

No surprises there then........EC Queen of Bristol presiding I presume.

 

[Dx Revision Watch]

This

The patient group must not have fixed views and are assessed/vetted by the PRO mega charities , so it's a group of yes men? The kids patient group is affiliated with ECs Bristol.

 

[slysaint]

"MEGA will apply for funding to set up a Bioresource that will be available for all researchers to use".
WHY? One exists already.
"
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 does this answer the question!
EC "she has wanted to explore the genetics and understand more about the different types of ME/CFS for many years"
So why didn't she; it's not as if she didn't have the funding

 

[Dx Revision Watch]

MEA's Dr Charles Shepherd is back posting again:

New thread:

New MEGA study website (30 November 2016)

http://forums.phoenixrising.me/index.php?threads/new-mega-study-website-30-november-2016.48118/

 

[Cinders66]

"MEGA will apply for funding to set up a Bioresource that will be available for all researchers to use".
WHY? One exists already.
"
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 does this answer the question!
EC "she has wanted to explore the genetics and understand more about the different types of ME/CFS for many years"
So why didn't she; it's not as if she didn't have the funding

So are they using existing bio bank or not?

Esther said 2010 they'd applied for runding 2010, big genetics study. Crearly U.K. Funders weren't of the minding then to fund anything biological

 

[Jo Best]

Just reading the 'Why MEGA' page and this sums it up really....time wasted on debating definitions when the original Ramsay sufficed and that fatigue isn't the prominent feature, which sorts it from other 'fatiguing; illnesses without any cutting edge science at all, let alone prospectively for several years and at such cost.

The problem
ME/CFS is a complex illness defined by a group of symptoms that characterise the disorder. Over the years, there has been extensive discussion among scientists, clinicians and people with ME/CFS about the case definitions for ME/CFS in an attempt to separate the illness/es from other chronic disorders where fatigue is also a prominent or common feature.

 

[TreePerson]

Just reading the 'Why MEGA' page and this sums it up really....time wasted on debating definitions when the original Ramsay sufficed and that fatigue isn't the prominent feature, which sorts it from other 'fatiguing; illnesses without any cutting edge science at all, let alone prospectively for several years and at such cost.

And the existing Biobank will not
include "other fatiguing illnesses" and will contain data from far too many people who are very ill with ME and not helped by EC style interventions.
So unless they commit to testing a proportionate number of patients with severe ME it is just a vast amount of money spent to keep EC and others in work.

 

[potbatch]

"Additionally, there will be a children and young people’s advisory group, which is an existing group working with the University of Bristol."

Apparently the children's advisory group is going to be the same one as for FITNET. So that's the same group that said it was OK for them to say they're using the NICE entry criteria even though they're not (because they removed the necessity of PEM) and the same group that said it was ok for kids in the activity management 'control' wing to be encouraged to increase their activity level by 10-20% per week up to 8 hours a day. Doesn't look good...

 

[batteredoldbook]

"MEGA is committed to meaningful engagement & communication with members of the ME/CFS community."

I feel this statement is cobblers.

http://www.megaresearch.me.uk

 

[batteredoldbook]

I made this reply to Prof Holgate (including some observations on FITNET). Haven't heard back from him yet.
https://spoonseeker.com/2016/11/28/fitnet-fiction/
Potbatch aka Spoonseeker

@potbatch,

I think your letters have been of a very quality and this has been recognized by the support they have gained from so many well known and well respected members of the M.E community. By choosing to ignore the major content of the message sent I think Professor Holgate's reply was unprofessional.

I am currently waiting for @charles shepherd to acknowledge the facts of the issue and have emailed three members of M.E Association (including Dr Shepherd) to alert them of this.

I believe MEGA is being forced through against the well reasoned concerns of patients. Both medicine and M.E charities have clearly learned nothing from the disaster of PACE and are ready to waste M.E patients time and burn through our trust all over again.

@batteredoldbook

@charles shepherd,

I'm asking because, a huge number of remarkably talented M.E patient advocates just signed a very clear vote of no confidence in Professor Esther Crawley. I've had a closer look at it and, well, wow: Look at all this!

"Unfortunately we have no confidence in any study involving Professor Crawley and certainly not one in which she is involved in this all-important role. [cohort selection]
"Professor Crawley seems unable to distinguish between M.E. and generic fatigue."
"Prof Crawley effectively selected children with generic fatigue yet called it CFS/ME"
"Professor Crawley is recruiting a group of patients with generic fatigue yet calling it CFS/ME."
"Professor Crawley further confusing the picture by selecting new definitions willy nilly for no obvious reason."
"she continues to defend the now discredited PACE trial"
"She continually refers to the Dutch FITNET trial having a 63% success rate even though its long term follow up showed no difference between the FITNET and control arms of the study;"
"Even more astounding is her continued defence of the PACE trial itself"
"yet Professor Crawley’s judgement seems to have been that one size of goal is as good as another."
"Perhaps most alarming is Professor Crawley’s intention to proceed with the Magenta Trial effectively a PACE trial for children, in spite of the debunking of PACE and the evidence from patients of severe and sometimes permanent deterioration as a result of GET."

And yet somehow Professor Holgate's response included this:

"As you will have noted I have brought the very best scientists from across the UK to assemble this application."

We cant seem to get through to PDW, the Lancet is currently going against the wishes of 12,000 of us, the CMRC is unable to say whether it supports the biggest bit of UK CFS research to date and Professor Esther Crawley appears to be going FULL STEAM AHEAD at a time that demands caution at the very least. After FITNET, MEGA and his response today, I do not think people with M.E can get through to Professor Holgate.

I want to know whether you are still with us Charles. I'm asking, quite simply, whether you think Professor Holgate responded adequately when 200+ M.E advocates told him very, very, clearly that they had no confidence in Professor Crawley?
@batteredoldbook

 

[Snowdrop]

A passing thought that I have been wondering about.
If MEGA has yet to submit a proposal and the funding is from Wellcome Trust and not specifically earmarked for ME research is it not possible to put together a competing proposal--one that has strong support from the ME patient/advocacy community. Perhaps even Davey-Smith could be lured away from MEGA to participate in something that is very tightly medical and well organised with strong protocols and excellent science and that uses the biobank?