Petition: Opposing MEGA

[Barry53]

The way I look at it is that the more ridiculous the claims they make become, the more satisfying it will be to see it all fall down.

They seem to be scoring more and more ridiculously stupid own goals, more and more publicly. Self publicising their own absurdity in this fashion, will eventually be their undoing I suspect.

 

[Dx Revision Watch]

Is this an option:-

If we can’t deal with your complaint ourselves, we will try to help you contact the right body.

Yes, it may be worth contacting ASA for the appropriate body, rather than waste time submitting something outside their remit. I'll stand correction, but I think the Research Ethics Committee has responsibility for review and approval of patient information sheets and this might extend to flyers/other literature for professionals.

 

[Dx Revision Watch]

Back in 2010, the ME Association issued a joint statement with Tymes Trust and put in complaints to the National Research Ethics Service (NRES) re the SMILE pilot.

http://www.meassociation.org.uk/stu...ss-is-unethical-says-joint-charity-statement/
http://www.meassociation.org.uk/201...ial-and-the-national-research-ethics-service/
http://www.meassociation.org.uk/201...to-lightning-process-and-children-with-mecfs/

I think the MEA (with or without Tymes Trust) should be taking up concerns over FITNET-NHS with Regional Ethics Committee or with NRES on behalf of its membership.

The fact that AYMES' Mary-Jane Willows is a Co-investigator should not deter the MEA from submitting complaints.

I hope concerns will also be raised at the next meeting of the Countess of Mar's Forward-ME group.

 

[TiredSam]

I for one would like to think there might be enough traction within the UK scientific community amongst those who are disturbed by this to challenge this absurd situation as it reflects so badly on them?

You'd think so. It's over 3 months since Julie Rehmeyer made jaws drop at a conference in Chicago held jointly with the UK's Royal Statistical Society. I'm still waiting for them to stand up and say something.

http://forums.phoenixrising.me/index.php?threads/rehmeyer-makes-statisticians’-jaws-drop-over-pace.46122/#post-750379

Unfortunately closing ranks / not getting involved seems to be the rule in the UK, which gives the rest of the world something else to be amazed about. Looks like the issue will have to be forced from outside, or maybe the rest of the world will just move on, leaving the UK behind to wallow in its own filth.

EDIT: following the FOI tribunal's decision, maybe there's a ray of hope from an independent judiciary, but everyone else seems to be in bed with each other.

 

[trishrhymes]

Chief Investigator Dr Esther Crawley

Co-investigators Professor William Hollingworth (University of Bristol), Dr David Kessler (University of Bristol), Professor John Macleod (University of Bristol), Dr Chris Metcalfe (University of Bristol), Dr Nicola Mills (University of Bristol), Professor Paul Stallard (University of Bath), Mrs Harriet Downing (University of Bristol), Dr Elise Van de Putte (UMC Utrecht), Dr Sanne Nijhof (UMC Utrecht), Associate Professor Hans Knoop (Radboud University Medical Centre), Professor Gijs Bleijenberg (Radboud University Medical Centre), Mrs Mary-Jane Willows (The Association for Young people with ME), Dr Simon Price (University of Bristol)

That is a long list of co-investigators. Surely there must be at least one among them bright enough and with sufficient ethics to see that this is a travesty of science.

If I had the energy I'd be tempted to send them all an e-mail with links to Tuller's article on FITNET, and a couple of video presentations on biomedical research following the recent international conference.

I would suggest to them that if they value their reputations and careers, they need to read/watch these and reconsider their involvement. I would point out that this 'work' is becoming the laughing stock of the international ME world, stuck in the dark ages etc., and they might want to get out before the shit hits the fan.

If I had the energy....

I just wasted an awful lot of energy writing to Holgate. My get up and go just got up and went.

Any takers?

 

[Dx Revision Watch]

BBC reply to the Countess of Mar (November 21) re FITNET-NHS

http://www.margaretwilliams.me/2016/bbc-reply-mar-nov21.pdf

Edit: I've put this letter on the FITNET-NHS thread as well at:

http://forums.phoenixrising.me/inde...ediatric-cfs-me-in-uk-fitnet-nhs.44967/page-6

 

[batteredoldbook]

I'd love to sign yours Trish, and I'd also happily sign @batteredoldbook 's letter, I really do think you should send it. Both are excellent!
We must keep protesting, it's all we can do. If they don't listen, at least we can say we tried and that they ignored our pleas and concerns. Doing nothing cannot be an option. Addressing them to the other researchers as well is a brilliant idea, SH can't just bury them then.

Thank you for compliment. I was happy with how it came out. ('Response to "Why we are supporting the MEGA research project"' also available here: https://justpaste.it/10o4c )
I've alerted MERUK to my text (and am still considering what to do in their regard) but don't plan to send it to CMRC/Holgate. If latter ever want to get in touch, they're welcome, but I will not address a stone wall.
As to Action/MEA/AYME - I think I'm done with them. The FITNET business is *too much*. Face-saving measures are one thing: a graceful withdrawal might speed things up, but we are not seeing withdrawal we are seeing FULL STEAM AHEAD. These M.E charities are far too close, too unquestioning and too willing to make choices that affect hundreds of thousands of patients, behind closed doors without true mandate.

 

[Barry53]

That is a long list of co-investigators. Surely there must be at least one among them bright enough and with sufficient ethics to see that this is a travesty of science.

I believe the issue of peer pressure will become increasingly significant, the bad science brigade becoming ever more evident as an embarrassment to be seen with. If you think about human nature, we know that the majority of researchers and their support staff will be good, ethical, highly professional individuals, taking pride in the work of themselves and their colleagues. How must they really feel to be part of such things. They are not blind, and the more publicly their dodgy colleagues embarrass them, the greater the peer pressure will become; and the greater EC and Co become pressurised, the more publicly they seem to embarrass their colleagues. A somewhat perverse virtuous circle.

 

[lilpink]

A bit of a run on the OMEGA petition tonight has taken the 10 PM screen grab figure (time matched with the MEGA petition) to 2912 compared with 'their' 2543. The petition has not closed. Please encourage people to keep signing.

https://www.change.org/p/opposing-m...autopublish&utm_term=des-lg-no_src-reason_msg

 

[batteredoldbook]

An inverted state.

In the absence of good science, there is nothing to prevent the social truth drifting away from the truth of physical reality. The extreme end result of this is always a complete reversal. Eg: post exertional malaise becoming "deconditioning" or pre exertional malaise.

Of course M.E itself ties patients to a realistic view of the truth, but nothing like that exists for medicine. Far from it. For many decades the socially accepted truth within medicine has been that there's nothing more wrong with pwme than a swift kick up the backside couldn't cure. This prejudice selected and continues to select for theories which support it.

The FITNET-NHS flyer appears to us outrageous but again, if British Medical science is in an inverted state, the "wrongness" of its claims will fit right in, re-enforce prejudice and against all that is good, the study will prosper.

Science like this kinda manages to self-replicate! Lol.

It is important to remember that our opposition within M.E is highly intelligent. They do not talk "drivel". What seems ridiculous to us does not seem ridiculous to them, nor to those who judge and fund their work. :S

ME is topsy turvy, up is down, hence it remains vital to rock the boat:

@batteredoldbook

 

[worldbackwards]

Colin Barton is just the worst (or tied with Mary Jane Willow?).

Oh, Barton's streets ahead. You know it in your heart. You don't get really weird stuff like this with MJ.

This reminds me a bit of when you've watched a film loads and you know everything there is to know about the main bad guys, so you can start turning your attention to a favourite ridiculous henchman in the background.

 

[Keela Too]

All I can think of at the moment is for people to contact the ME support groups with some kind of warning about ECs studies.
here is a list:
ME SUPPORT GROUPS UK. . . . . .

Just wondering where your list was sourced - because

Hope 4 ME & Fibro Northern Ireland
is still listed as:
Newry and Mourne ME fibromyalgia Support Group

and it would be good to get this changed. Thanks.

 

[Keela Too]

BBC reply to the Countess of Mar (November 21) re FITNET-NHS

http://www.margaretwilliams.me/2016/bbc-reply-mar-nov21.pdf

Shocking that they can't see tha bias - but not surprising I guess.

 

[user9876]

So now we have the ridiculous position where the best thing that any genuinely caring pediatrician can do for a child with ME is to withhold an ME diagnosis, because to diagnose them is to put them at risk of being caught up in childcatcher Crawley's ME to GET pipeline and having their health permanently ruined.

It is very hard for children who are ill without a diagnosis because the schools start chasing them and child protection issues or other legal issues can come into play. But then there are implicit threats of child protection when choice is exercised or even where doctors disagree (the parents get the blame).

 

[Cinders66]

BBC reply to the Countess of Mar (November 21) re FITNET-NHS

http://www.margaretwilliams.me/2016/bbc-reply-mar-nov21.pdf

Edit: I've put this letter on the FITNET-NHS thread as well at:

http://forums.phoenixrising.me/inde...ediatric-cfs-me-in-uk-fitnet-nhs.44967/page-6

What a staggering reply. They really don't get that the row over psychological vs physical should be dead and buried, the SMC fed this story or that the fact the PACE trial, which is now under question, is being used by EC as basis for her studies in kids. Bbc did no more self reflection or investigation than the other media who copied the story in to their notebooks at the SMC. I guess the study was designed to be the biggest ever (still can't see what is so newsworthy About this study start up) deliberately so that could be spun and it's still by nature of press coverage therefore hyping up CBT as a treatment for this illness without the proper context emphasis on ME being serious multi-system disease.

 

[slysaint]

Just wondering where your list was sourced - because

Hope 4 ME & Fibro Northern Ireland
is still listed as:
Newry and Mourne ME fibromyalgia Support Group

and it would be good to get this changed. Thanks.

AfME website

 

[Dx Revision Watch]

It is very hard for children who are ill without a diagnosis because the schools start chasing them and child protection issues or other legal issues can come into play. But then there are implicit threats of child protection when choice is exercised or even where doctors disagree (the parents get the blame).

Indeed.

In England, regular non attendance at school will trigger the involvement of the educational welfare officer (EWO) attached to the child's school, the school's special educational needs officer (SEN), the Community Paediatrician service (this is in addition to the child's hospital paediatrician). In some cases, social services may become involved. The child and family may also be offered psychological assessment.

Many agencies (the multidisciplinary team) will become involved with the child's medical care and the delivery of education. So a diagnosis is essential. Unlike adults, who can take time off work when ill, a child/young person must continue to receive education or be exempt by the paediatrician until able to cope with short periods of tuition - even if this is less than an hour a day.

It can be very difficult to get the LEA to agree to provide a home tutor because of the expense. Some children may be pressured by the Community Paediatrician service to attend (what were known as) Pupil Referral Units - totally inappropriate for the needs of most children/young people with ME.

In order for home tuition to be obtained from the LEA (Local Education Authority), letters in support of home tuition are required from the hospital consultant/EWO or other clinician involved. Once home tuition has been put in place, letters of approval for the continuation of home tuition are required periodically to satisfy the LEA.

If a young person is able to sit some GCSE examinations, either in school or at home, special provisions will need to be applied for from the exam boards by the school/LEA tutor for additional time, rest breaks, amanuensis if required and provision of an invigilator, if the exams are being taken at home; so a diagnosis and the support of the school/LEA and possibly letters from the medical team will be required by the exam boards.

Some families with children or young people with ME will elect to take the child out of the mainstream educational system and home educate - that in itself will likely raise a red flag on the child's medical file.

In 2003, I had a letter published in the print edition of the BMJ which set out just how many agencies can end up involved in the medical care and education of a child with long-term illness.

https://www.ncbi.nlm.nih.gov/pubmed/12596800
BMJ. 2003 Feb 22;326(7386):449.
Copying letters to patients. Copying letters can help avoid communications nightmare.
Chapman S.

As I said in the BMJ:

"...For parents of young people who are unable to access mainstream education because of long term illnesses such as myalgic encephalomyelitis/chronic fatigue syndrome the difficulties in maintaining effective liaison between school, special educational needs coordinator, educational welfare officer, home tuition coordinator, general practitioner, hospital consultant, community paediatrician, and local education authority can be serious. In addition, some families also deal with social services and child and adolescent mental health services, as well as having input from the Connexions Service. For many it can be a communications nightmare on top of an already challenging situation. Anything that helps to improve liaison, such as receiving copies of hospital letters, is to be welcomed, and I would advise all parents to ask for copies of these letters if they do not already receive them."

I know too many families who have had problems with social services, have had child protection involvement or whose sick children have been placed on the "at risk" register or threatened with placement on the "at risk" register, where there have been disputes between clinicians and other agencies or between clinicians and the family over the child's diagnosis.

Caveat: Our experiences of the system were between 1999-2003

 

[Jo Best]

A bit of a run on the OMEGA petition tonight has taken the 10 PM screen grab figure (time matched with the MEGA petition) to 2912 compared with 'their' 2543. The petition has not closed. Please encourage people to keep signing.

https://www.change.org/p/opposing-m...autopublish&utm_term=des-lg-no_src-reason_msg

Not bad going considering the petition organisers didn't have the slick CMRC publicity machine supporting them.

 

[batteredoldbook]

AfME website

Multi lols!

 

[Snow Leopard]

@Dx Revision Watch Wow! I'm shocked to hear how much bullshit they are putting children through in the UK.

I'm so glad I didn't have to deal with that level of bullshit when I was first ill as a teenager.