Petition: Opposing MEGA

[Snowdrop]

https://www.actionforme.org.uk/news/why-we-are-supporting-the-mega-research-project/[/QUOTE

You can find out more about the MEGA vision and engage with team on the new MEGA website which will be launched very soon. We will link to the site as soon as it becomes live.

Absolutely nothing new here. You'd be tempted to think they don't listen to what patients are saying.

@slysaint I believe Nicki Strong has been active in advocacy. I think her son has ME.

Also, found this: https://www.ucl.ac.uk/ich/news/ich-news-publication/orchard-therapeautics

Thinking they might be the VC's.

 

[Dx Revision Watch]

I too am curious about the strange choice of the word 'surveillance'.

http://www.rcpch.ac.uk/bpsu

British Paediatric Surveillance Unit

The British Paediatric Surveillance Unit (BPSU) enables doctors and researchers to find out how many children in the UK and Republic of Ireland are affected by particular rare diseases or conditions each year.
The Unit was set up in 1986. It is a joint initiative of the Royal College of Paediatrics and Child Health (RCPCH), Public Health England (PHE) and the Institute of Child Health (ICH) to support research into rare childhood disorders etc.

http://www.rcpch.ac.uk/child-health...h-paediatric-surveillance-unit/news/bpsu-news

http://www.rcpch.ac.uk/improving-ch...h-paediatric-surveillance-unit/studies/bpsu-s

 

[Dx Revision Watch]

One last blast at EC (for today). As others have pointed out, she's stayed very quiet about SMILE.......
https://frownatsmile.wordpress.com/2016/02/14/smile-trial-summary-of-concerns/

"
We have now finished recruiting and we plan to break the code and conduct the analyses in May/June 2014. We hope that we will be able to publish the results at the end of the 2015.

We have finalised the analyses plan which you can look at here (PDF, 696kB)"

Anyone know who/how to ask where the results are?

Only materials I have are:

http://www.ncbi.nlm.nih.gov/pubmed/24304689

The feasibility and acceptability of conducting a trial of specialist medical care and the Lightning Process in children with chronic fatigue syndrome: feasibility randomized controlled trial (SMILE study).

Crawley E1, Mills N, Beasant L, Johnson D, Collin SM, Deans Z, White K, Montgomery A.

2013 Dec 5;14:415. doi: 10.1186/1745-6215-14-415.

TRIAL REGISTRATION NUMBER: ISRCTN81456207.
http://www.isrctn.com/ISRCTN81456207
Specialist Medical Intervention & Lightning Evaluation: Comparing specialist medical care with specialist medical care plus the Lightning Process for Chronic Fatigue Syndrome or Myalgic Encephalopathy (CFS/ME)

Background and study aims etc

Towards the bottom of page

http://www.isrctn.com/ISRCTN81456207

above "Publication citations"

Publication summary
2013 protocol in: http://www.ncbi.nlm.nih.gov/pubmed/24370208
2013 results in: http://www.ncbi.nlm.nih.gov/pubmed/24304689

2015 results in: http://www.ncbi.nlm.nih.gov/pubmed/26453575

Arch Dis Child. 2015 Dec;100(12):1141-7. doi: 10.1136/archdischild-2015-308831. Epub 2015 Oct 9.
What matters to children with CFS/ME? A conceptual model as the first stage in developing a PROM.
Parslow R1, Patel A2, Beasant L1, Haywood K3, Johnson D1, Crawley E1.

~~~~~~~~~~~~~~~~~~~~~~

Free copy of the Arch Dis Child. December 2015 paper here:

Arch Dis Child. 2015 Dec; 100(12): 1141–1147.
Published online 2015 Oct 9. doi: 10.1136/archdischild-2015-308831

Text: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4680202/

PDF: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4680202/pdf/archdischild-2015-308831.pdf

 

[batteredoldbook]

£12M / 250,000 = £48 per #pwme
"Listen, the research is tempting but we've had a lovely day & we'd like to take the money instead please"
#OpposingMEGA

 

[lilpink]

https://www.rsm.ac.uk/about-us/late...on-wessely-elected-as-next-rsm-president.aspx

sir simon wessely elected as next rsm president
Professor Sir Simon Wessely has been elected as the next RSM President. An RSM member since 1992 and admitted as an Honorary Fellow in 2014, Sir Simon is currently President of the Royal College of Psychiatrists. He will be inaugurated as RSM President in July 2017, succeeding Mr Babulal Sethia.

Sir Simon is Professor of Liaison Psychiatry and Co-Director, King’s Centre for Military Health Research and Academic Department of Military Mental Health, Institute of Psychiatry, Psychology and Neuroscience, King’s College London.

Commenting on becoming President-Elect, Sir Simon said: “I am delighted to have been elected as President of this very distinguished organisation where I spent many happy hours ferreting in the archives when I was a junior doctor. I am also proud that I am the first psychiatrist to have received this honour - confirming that psychiatry is literally and symbolically at the heart of medicine.”

 

[Dx Revision Watch]

https://www.rsm.ac.uk/about-us/late...on-wessely-elected-as-next-rsm-president.aspx

sir simon wessely elected as next rsm president
Professor Sir Simon Wessely has been elected as the next RSM President. An RSM member since 1992 and admitted as an Honorary Fellow in 2014, Sir Simon is currently President of the Royal College of Psychiatrists. He will be inaugurated as RSM President in July 2017, succeeding Mr Babulal Sethia.

Sir Simon is Professor of Liaison Psychiatry and Co-Director, King’s Centre for Military Health Research and Academic Department of Military Mental Health, Institute of Psychiatry, Psychology and Neuroscience, King’s College London.

Commenting on becoming President-Elect, Sir Simon said: “I am delighted to have been elected as President of this very distinguished organisation where I spent many happy hours ferreting in the archives when I was a junior doctor. I am also proud that I am the first psychiatrist to have received this honour - confirming that psychiatry is literally and symbolically at the heart of medicine.”

Well, let's hope that when he tires of collecting accolades, he doesn't decide to pursue a new career in politics.

 

[Countrygirl]

https://www.rsm.ac.uk/about-us/late...on-wessely-elected-as-next-rsm-president.aspx

sir simon wessely elected as next rsm president
Professor Sir Simon Wessely has been elected as the next RSM President. An RSM member since 1992 and admitted as an Honorary Fellow in 2014, Sir Simon is currently President of the Royal College of Psychiatrists. He will be inaugurated as RSM President in July 2017, succeeding Mr Babulal Sethia.

Sir Simon is Professor of Liaison Psychiatry and Co-Director, King’s Centre for Military Health Research and Academic Department of Military Mental Health, Institute of Psychiatry, Psychology and Neuroscience, King’s College London.

Commenting on becoming President-Elect, Sir Simon said: “I am delighted to have been elected as President of this very distinguished organisation where I spent many happy hours ferreting in the archives when I was a junior doctor. I am also proud that I am the first psychiatrist to have received this honour - confirming that psychiatry is literally and symbolically at the heart of medicine.”

As they say, the devil looks after his own.

 

[Chrisb]

We should all feel very proud of the part we have played in providing that vital rung on the ladder which enabled such heights to be scaled.

 

[worldbackwards]

We should all feel very proud of the part we have played in providing that vital rung on the ladder which enabled such heights to be scaled.

Yes, the feel of his size 10s pressed firmly on my head for the past two decades has been a constant source of joy.

 

[worldbackwards]

The Royal Society of Medicine (RSM) is one of the major providers of accredited postgraduate medical education in the United Kingdom.

https://en.wikipedia.org/wiki/Royal_Society_of_Medicine
Not much damage he can do there then.

 

[Jo Best]

Opposing MEGA petition update - https://www.change.org/p/opposing-m...idence-in-mega-research-for-me-cfs/u/18554906

22 NOV 2016 — David Tuller, PhD, is academic coordinator of the concurrent masters degree program in public health and journalism at the University of California, Berkeley. He has kindly hyperlinked to our Opposing MEGA petition in his latest article about ME/CFS research - Trial by Error, Continued: The New FITNET Trial for Kids. Dr. Tuller is renowned for his outstanding in-depth analysis of the PACE trial, posted in full on Professor Vincent Racaniello's Virology Blog. He wrote -

"Dr. Crawley is a professor of child health at the University of Bristol. She is also currently recruiting for the MAGENTA study of graded exercise therapy for children with the illness. She is a lead player in the U.K. CFS/ME Research Collaborative, an umbrella organization that is sponsoring an ambitious Big Data effort called MEGA, now in the planning stages. While patients and advocates are desperate for the kind of top-notch biomedical and genetic research being proposed, many oppose MEGA precisely because of the involvement of Dr. Crawley and Peter White, the lead PACE investigator. (Dr. White is reportedly no longer involved in MEGA; Dr. Crawley still definitely is.)" Read the full article here - http://www.virology.ws/2016/11/21/trial-by-error-continued-the-new-fitnet-trial-for-kids/

A commenter on the article wrote,
"You may be interested to this blogpost, David. https://opposingmega.wordpress.com/2016/11/19/dr-keith-geraghty-comments-on-opposing-mega/
It ties in nicely to what you are saying. Same group of people involved."

The blogpost referred to contains a shocking account of how one junior researcher joining the UK CFS/ME Research Collaborative (CMRC) has been treated by the CMRC.

By late afternoon 23rd November, our Opposing MEGA counter-petition will have been open for the same number of days as the MEGA petition (which closed on the evening of 2nd November).

MEGA has 2543 signatures (less than when it closed as it is possible to unsign a petition after closing). Opposing MEGA has already exceeded that, and will remain open to sign, but it would be good to reach 3,000 by the end of the day on 23rd November.

We very much appreciate everyone taking the time and trouble to look into the very serious issues raised by the opposition to MEGA and will endeavour to keep our website updated with developments -
https://opposingmega.wordpress.com

Thanks to all supporting in whatever way.

p.s. An excellent article on ME/CFS by David Tuller was published last month, 'Worse Than the Disease' - http://undark.org/article/chronic-fatigue-graded-exercise-pace

 

[Jo Best]

Just catching up on facebook and saw this in Invest in ME's group here - https://www.facebook.com/groups/5804522506/permalink/10154145727332507/

It's an article from their January 2009 newsletter. Uncanny?!

So picture this scenario .............................
--------------------------------------------------------------

The problems with MRC policies, and everything they have led to, is something the charity has been commenting on for some time.

Notably this is maybe epitomised by the last week's events regarding discussions and emails by CMRC members to contact the charity's advisors without our knowledge.

From our January 2009 newsletter - in the section MRC and Biomedical Research on Page 3.

Almost 8 years on and these words from that newsletter seem very prescient –
especially the predictions (and when reading consider that this was eight years ago - eight years of people's lives) -

[http://www.investinme.org/…/Invest%20in%20ME%20January%20Ne… ] –

“In recent months we have attempted to urge caution on the news of the UK Medical Research Council's plans for a "multi-disciplinary" panel to be set up for ME.

We are concerned that this panel, under Professor Stephen Holgate, is meant to marry the psychosocial view of those who perpetuate the myth of ME being a behavioural disorder with biomedical research. Have the MRC attempted to sweeten the perception of this panel's objectives by including two charities in the panel - in this way supposedly giving it authenticity in the eyes of the ME community?

How would this work if the two quite distinct sets of participants are studying different people and using completely different ME guidelines? What could this achieve but a total fudge and a complete blending of ME with the other nebulous chronic fatigue states so beloved of the psychiatric lobby.

One will likely hear much comment from this panel that the MRC panel is discussing biomedical research into ME.

We believe this scenario now represents a worrying and less than ideal future for ME.

We believe that money will be provided for ME by the MRC - at long last.

However, we also believe that the reason that the MRC panel is made up of many notable psychosocial proponents augurs badly for people with ME and their families.

The MRC have supported and funded the psychosocial view of ME for years and we don't believe their true objectives will change quite so quickly.

The PACE and FINE trials - the two ugly sisters of MRC policy on ME (see here http://www.investinme.org/Article-015%20FINE%20Trials.htm ) - are unscientific and essentially worthless trials funded by the MRC at the expense of true biomedical research.
They will soon draw to a close and their results are almost certain to appear that CBT and GET are beneficial for people with ME. These studies are a not representative of ME but their results will be used to "justify" MRC intentions to perform more psychosocial research under the guise of biomedical research.

Professor Holgate's stated intention of tying both biomedical and psychosocial factions together will be a liability for future research.

So picture this scenario –

• The MRC panel will state that it will promote biomedical research and lull the ME community into a false sense of progress

• The PACE and FINE trials will produce reports stating that CBT/GET are useful for ME patients

• The MRC will announce that it is investing heavily into research in ME

• The psychiatrists who have for so long monopolised the funds will control or heavily influence pseudo-biomedical research which will be aimed at proving that psychiatric paradigms being used for treatment of ME actually show biological evidence of their effectiveness

• The psychiatrists will still control what the MRC fund and how they fund it

We are concerned that the MRC may masquerade their true psychosocial bias by merging biomedical research with input from psychiatrists and will force through findings that CBT and GET really make a difference.
Such trials will be able to prove almost anything.

And so people with ME and their families will be consigned to another two or three years of false hopes and, eventually, wasted opportunities.

Another major concern may be that organisations (and biomedical research charities) which do fund and/or perform biomedical research will start to chase this new MRC money at any cost, under the illusion that the "MRC-funded" label will give authenticity to their research - even though it may well be constrained by manipulation from psychiatrists and destined to validate the views of psychiatrists.

Professor Holgate is now in a position where he can be open and honest about the MRC intentions or he can perform a monumental subterfuge with the future of pwme being the casualties.

Professor Holgate has once again been invited to the IiME International ME/CFS Conference.

We hope this year he will accept - there is a lot he needs to think about."

 

[char47]

Wessely at the RSM

despair. utter despair

 

[Barry53]

In David Tuller's latest article...

http://www.virology.ws/2016/11/21/trial-by-error-continued-the-new-fitnet-trial-for-kids/

... he says this about Stephen Holgate:-

At the SMC press briefing presenting FITNET-NHS, one of the experts appearing with Dr. Crawley was Dr. Stephen Holgate, the leader of the CFS/ME Research Collaborative and a professor of immunopharmacology at the University of Southampton. According to the BBC report, he praised the new trial as “high-quality research.” This endorsement suggests that Dr. Holgate, like Dr. Crawley, does not appreciate the significance of the distinction between the symptom of chronic fatigue and the illness called chronic fatigue syndrome—a troubling blind spot. It also suggests that Dr. Holgate is unaware or unconcerned that the main support for the use of CBT in this illness, the PACE trial, has been discredited.

 

[trishrhymes]

sir simon wessely elected as next rsm president

f****** Sir f**** Simon f****** Wessley
I'm speechless.
The lunatics have taken over the asylum.
And I've just spent the last 6 hours or so composing a letter to Stephen Holgate.
So that was a waste of f******* time.
Think I'll emigrate to the moon.

 

[trishrhymes]

Hey, I wonder how seriously pissed off PW is that he's been forced into early retirement by the PACE fiasco while his old mate SW collects yet another accolade. Do you think old PW is sufficiently pissed to do the dirty on SW and tell all about how they fudged and distorted their 'research' and it was all at SW's instigation and it's all a made up pack of lies and has damaged the health of thousands of patients.
Yes, I know I'm being rash here, but I'm past caring.

 

[Jan]

I seem to have completely missed the boat as regards to signing any of these letters (and I do believe they should still be sent). Could you post a link to where I can sign please?

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.

 

[Countrygirl]

Wow! Impressive stuff here. The Bath clinic are so sure of the trial results before the 'research' has begun that they have made this advertisement:

 

[Countrygirl]

Could a case be made to trading standards for false advertising as it is using our taxes to fund it?

 

[Valentijn]

Wessely at the RSM

despair. utter despair

The bigger they are, the harder they'll fall.

And it'll make a much more attractive story when it involves one of the patient-bashing fraudsters having risen to a very high position in the medical community.