"Got ME? Just SMILE!" - Media coverage of the SMILE trial…..

[Forbin]

More and more, I get the impression that these therapies don't exist to cure or even treat patients, but to make us more presentable to the sensibilities of healthy people; that is, to compel us to present as healthy, regardless of our actual well-being.

"Light up your face with gladness - Hide every trace of sadness..."

This classic song (music by Charlie Chaplin) can take on a very creepy aspect in light of the SMILE trial. One hopes to God that this is not where they got the name.

[Warning: Although a song of hope, it can be a very melancholy experience.]

 

[NelliePledge]

Another article in the Guardian ..

Hospital bosses forced to chant 'we can do this' over A&E targets
Trust leaders say they were left feeling ‘bullied and humiliated’ by the incident at a meeting to improve performance


I can only hope that these same Trust leaders recall their experience - should they still be in post - and at some future point seek to implement/be asked to implement LP on children.

Wishing everyone improved health and every happiness. John

This is worthy of David Brent
[ the character from the sitcom the Office invented and played by Ricky Gervais (clip of him in Unrest doing stand comedy "joking" about ME)]

 

[Esther12]

Hi Cinders66, thanks! you're welcome. Yeah I criticised the headlines (quite right) then made a meal of not criticising the trial (PACE) - i had been asked, as it was a talk on patient involvement, not to actually name trials I/we hated, as it's not a slagging match.

LOL.... who asked you that?

MEGA does seem to be contentious, but we are exerting as much influence as we can - and if we weren't, and it got funded, yikes!!! Best to have some involvement than no involvement - which means no patient voice - no influence, which was something that, at the CMRC conference, was being pushed as a VERY. GOOD. THING. (and the opposite of us NOT being listened to when the likes of PACE came out, & CBT & GET were being approved by psychiatrists as the "best practice" for the illness ..... Even tho i was better by 2011, my heart sank & I knew this was all WRONG WRONG WRONG - but White, Chalder, Sharpe etc didn't listen to patients & did their own thing anyway ARGH!!!!!).

I think that some people can understimate how much researchers now need to be able to show patient involvement and support in order to gain funding. Action for ME's involvement with PACE helped get it funded and gave the PACE researchers a lot of additional cards to use against patients. The open patient opposion to MEGA will cause problems for funders, and rightly so. If patients stopped supporting Crawley's attempt to gain further funding that would really harm her ability to continue to smear patients and promote quackery. It's not right to just assume that some involvement must be better than no involvement.

The 'influence' patients get over research does not come for free, and their very involvement helps to empower the researchers that they are working with. It's very easy to do more harm than good if working with a researcher like Crawley, in fact, I think it's proably impossible to do more good than harm, regardless of people's intentions.

It would be interesting to see what would happen if the PAG were clear that patients are right to be opposed to more research funding going to Crawley, and that she should not continue her involvement with MEGA.

 

[TiredSam]

I think that some people can understimate how much researchers now need to be able to show patient involvement and support in order to gain funding.

Crawley will always find patients to involve in her "research", even if every M.E. sufferer in the UK boycotts her trials. She can just round up a load of teenagers whose parents have answered a questionnaire saying the kid isn't sleeping properly (teenagers - duh ) and call them M.E. patients instead.

 

[AndyPR]

The Opposing MEGA petition is still open - https://www.change.org/p/opposing-mega-a-vote-of-no-confidence-in-mega-research-for-me-cfs

Now at 3,298 supporters.

 

[Jonathan Edwards]

I think that some people can understimate how much researchers now need to be able to show patient involvement and support in order to gain funding.

I agree with TiredSam's point - there will always be stooges ready to fill the slot. I think people may underestimate just how much has changed because of sensible patients volunteering to be on advisory groups. And OMEGA was, after all, a response to the MEGA drive to get patient signatures.

MEGA has not been funded. NICE is reviewing its guidelines, Cochrane is asking around more widely for advice.

I suspect that an important factor in all these has been patients expressing their concerns from within - probably without fuss and noise. If research success is dependent on patient involvement then I think that should be capitalised on.

 

[AndyPR]

And OMEGA was, after all, a response to the MEGA drive to get patient signatures.

Yes, it was, but it was also a response to both Crawley and, at the time, White being involved. White has now gone, but Crawley is still there, and subsequently we have learnt that Davey-Smith has drunk the BPS kool-aid. That's what the petition is about for me. I'm in no position to be able to operate on a PAG, or any other involvement group, so this is my way of expressing my opinion, given that when I contacted Holgate direct, I was ignored. In my opinion, MEGA needs to be torn up, its direction rethought (who needs ANOTHER UK biobank, we have one already) and a number of existing participants not invited back in - only then would I be likely to support it.

 

[Jonathan Edwards]

Yes, it was, but it was also a response to both Crawley and, at the time, White being involved. White has now gone, but Crawley is still there, and subsequently we have learnt that Davey-Smith has drunk the BPS kool-aid. That's what the petition is about for me. I'm in no position to be able to operate on a PAG, or any other involvement group, so this is my way of expressing my opinion, given that when I contacted Holgate direct, I was ignored. In my opinion, MEGA needs to be torn up, its direction rethought (who needs ANOTHER UK biobank, we have one already) and a number of existing participants not invited back in - only then would I be likely to support it.

I entirely agree, Andy. But my point is that different people approaching from different angles does more. If I had been asked to sit on the MEGA committee, which I might, if it had more to do with my particular skills, then I think I should have said yes, and from within the committee then pointed out that the recruitment methodology was useless and the objectives too vague and that if I was on a reviewer panel at Wellcome or MRC I would turn it down flat.

 

[Dx Revision Watch]

Apologies if already posted:

Just had this info sent to me:

Parker is presenting on lightning for POTS at heart conference, at 13.55 on 2nd October. He says POTS is part of ME. Julia Newton is presenting in the same presentation session:

http://www.heartrhythmcongress.org/programme/02-10-2017/5

STARS POTS and Syncope : A multifaceted approach - Hall 8a - 13:30 - 17:15

13:55 The lightning process: what is it and can it be applied to patients with POTS? Phil Parker

15:45 Chronic Fatigue, Myalgic Encephalomyelitis (ME) and POTS: What is the difference? Julia Newton

16:30 The psychological profile of POTS: Managing anxiety and illness behaviour Morwenna Opie-Moran

http://www.potsuk.org/who_are_we

PoTSUK

"Dr Morwenna Opie-Moran, Trustee, Morwenna is a Clinical Psychologist based in London and specialising in anxiety and mood disorders. She has a special interest in maximising psychological well-being in the context of compromised physical health – an interest brought sharply into focus when she developed PoTS in 2012.

Professor Julia Newton is one of several Medical Advisers to PoSTUK;
Dr Phil Hammond is a Patron.

 

[AndyPR]

I entirely agree, Andy. But my point is that different people approaching from different angles does more. If I had been asked to sit on the MEGA committee, which I might, if it had more to do with my particular skills, then I think I should have said yes, and from within the committee then pointed out that the recruitment methodology was useless and the objectives too vague and that if I was on a reviewer panel at Wellcome or MRC I would turn it down flat.

Well, my apologies then as I read your post as being somewhat dismissive of the petition.

I wish I could share your optimism in the level of influence of patients "on the inside". If researchers truly want patient "buy-in" to their efforts, not only do they need to include something like a PAG but also allow that PAG to communicate as freely as possible to the wider patient community, otherwise, rightly or wrongly, a large part of the community will view them as mere window dressing, added into a project to make it look pretty.

 

[Solstice]

I entirely agree, Andy. But my point is that different people approaching from different angles does more. If I had been asked to sit on the MEGA committee, which I might, if it had more to do with my particular skills, then I think I should have said yes, and from within the committee then pointed out that the recruitment methodology was useless and the objectives too vague and that if I was on a reviewer panel at Wellcome or MRC I would turn it down flat.

You're making me rethink some of my positions on being in tents and all that.

 

[slysaint]

and their very involvement helps to empower the researchers that they are working with

Yes, EC has 'used' a patient for SMILE interviews and before for FITNET (patient was with MJ Willows), both of whom were clearly well coached to trot out the message that they recovered with her treatment and recently that researchers are the subjects of 'abuse'. The last one 'Anne' made a point of saying she wanted to remain anonymous for that reason........but it transpired that she had not done the LP and had been a patient of Crawley for 4 years.

 

[lilpink]

Another article in the Guardian ..

Hospital bosses forced to chant 'we can do this' over A&E targets
Trust leaders say they were left feeling ‘bullied and humiliated’ by the incident at a meeting to improve performance


I can only hope that these same Trust leaders recall their experience - should they still be in post - and at some future point seek to implement/be asked to implement LP on children.

Wishing everyone improved health and every happiness. John

How hilarious that hospital bosses feel patronised by this utter **** (yes I know a lot of 4 letter words too... I find they get a lot of air time these days!). Maybe they can start to imagine what it is like for people with ME to have been abused and patronised for decade after decade and from the very people who are supposed to 'care'? The difference of course here being that those hospital bosses can go home, have a stiff gin and shrug off such irritations whilst continuing to live their lives. No chance of that for anyone with ME is there?

 

[lilpink]

Cochrane is asking around more widely for advice.

That's news to me. Can you elaborate please?

 

[lilpink]

Yes, it was, but it was also a response to both Crawley and, at the time, White being involved. White has now gone, but Crawley is still there, and subsequently we have learnt that Davey-Smith has drunk the BPS kool-aid. That's what the petition is about for me. I'm in no position to be able to operate on a PAG, or any other involvement group, so this is my way of expressing my opinion, given that when I contacted Holgate direct, I was ignored. In my opinion, MEGA needs to be torn up, its direction rethought (who needs ANOTHER UK biobank, we have one already) and a number of existing participants not invited back in - only then would I be likely to support it.

Yes..all bar the last sentence. There should be no attempt to secure the CMRC or MEGA imo. 'Silk purse' and 'sow's ear' come to mind. What ever is the point in trying to clean up an organisation which is sullied to its very roots? Rip it up and either start with a blank piece of paper (not a 'White' one) or get on with collaborating in a less artificial way outside any construct at all. Which is already happening..and working very well indeed.

If we need anything we need a very good, zero tolerance, politically nuanced, media savvy patient charity because we don't have one in the UK. Children have TYMES Trust which is very well run but is low key on advocacy. The two UK patient charities are also sullied by links to dubious people and organisations. Now that's where I'd start ...if I had the energy ..but.. surprise!: I don't.
The thing is that the really gung-ho advocates are often the illest and least able to actually physically do what is needed. They are 'gung-ho' and can see through the **** because their circumstances lend a very critical eye on the overarching landscape of this disease and how politics intertwines with research and how advocacy has to be directed at not wasting time on silly projects that have more to do with individual egos instead of getting to the bottom of this dratted disease which takes our lives away.

I have never been an autonomous adult... I don't know what that is like. I am still waiting to start living. I have only one objective and that is to move things on so that we cut out all the **** and use only the people who are honourable and decent and won't lie and cajole behind the scenes creating collaborations and cabals which will never ever lead to any benefits for patients. I truly believe that the 'patient', who should be at the centre of all this, has been lost... it's as though these organisations and charities now exist in some altered reality where their own dogma rules whether it has any bearing on what patients want or not. This needs to end.

 

[lilpink]

Dr Phil Hammond is a Patron.

Well what a surprise! Not...

 

[MEMum]

I heard from a Mum last week, at the London ME group, that her daughter had been to see Dr Gall in London re POTS. He was very helpful and very "mainstream". Should be a good chair of this session.
Why on earth has PP been asked to talk at a Medical Heart Rhythm Conference?

13:55 The lightning process: what is it and can it be applied to patients with POTS? Phil Parker
14:20 A Cardiovascular approach to POTS Nicholas Gall London UK

 

[Mrs Sowester]

I've just found 10 quacking rubber ducks for £2.29 including postage on ebay, what a wonderful gift idea for someone...

 

[slysaint]

what a wonderful gift idea for someone...

 

[Yogi]

Hi Cinders66, thanks! you're welcome. Yeah I criticised the headlines (quite right) then made a meal of not criticising the trial (PACE) - i had been asked, as it was a talk on patient involvement, not to actually name trials I/we hated, as it's not a slagging match. I could have worded it better, eg. "This headline is shit, and whatever your opinion is on the trial behind it ..... (pauses and looks meanly around the room, maybe coughing/belching)..... this sort of headline isn't welcome amongst the patient community" .

MEGA does seem to be contentious, but we are exerting as much influence as we can - and if we weren't, and it got funded, yikes!!! Best to have some involvement than no involvement - which means no patient voice - no influence, which was something that, at the CMRC conference, was being pushed as a VERY. GOOD. THING. (and the opposite of us NOT being listened to when the likes of PACE came out, & CBT & GET were being approved by psychiatrists as the "best practice" for the illness ..... Even tho i was better by 2011, my heart sank & I knew this was all WRONG WRONG WRONG - but White, Chalder, Sharpe etc didn't listen to patients & did their own thing anyway ARGH!!!!!). Rest assured NO-ONE on MEGA (if funded of course) will NOT have properly defined PEM. All the PAG are passionately behind this. See the FAQ page here - item 3. http://www.megaresearch.me.uk/qanda/ All this is on hold right now as, as you know, we're not funded, so I'm not really doing anything these days except this I suppose! (I'm semi retired).

cheers & thanks for the reply
Phil

Hi

Nice to see you on the forum.

My comment about 'stooge' was not directed at you on a personal level but as a general description of what happens when their is involvement with psychiatrists and BPS. Sorry if I caused you offence - I am really angry at this MEGA/CMRC shenanigans. You do know that MEGA and CMRC are the brainchild of Simon Wessely and Peter White? I cannot understand how anyone with ME in good faith can collaborate with them and Esther Crawley.

Patient involvement are there to be used for the BPS purposes and will be ignored as history has shown.

Have you read the history and politics of ME? Please read the MEActionUK articles (link in my signature). Once you have read these you will understand that patients are used for the BPS own ends and will have no meaningful input or ability to change things for the better. It is very naive to think given the 30 year history that things will change. To think that Wessely/White/Crawely leopard will change its spots is deluded.

This MEGA will be a disaster for the patient community. Please read up about MEGA and the OMEGA petition.

The fact that you were prohibited from criticising past trials shows everything about how much patient involvement there will be. Why are you silenced. That is unacceptable. If you cannot openly criticise and learn from the biggest science scandal the PACE trial then it means they will REPEAT those same mistakes (or in actual fact repeat the fraud).

You say:

MEGA does seem to be contentious, but we are exerting as much influence as we can - and if we weren't, and it got funded, yikes!!! Best to have some involvement than no involvement - which means no patient voice - no influence, which was something that, at the CMRC conference, was being pushed as a VERY. GOOD. THING.(and the opposite of us NOT being listened to when the likes of PACE came out, & CBT & GET were being approved by psychiatrists as the "best practice" for the illness ..... Even tho i was better by 2011, my heart sank & I knew this was all WRONG WRONG WRONG - but White, Chalder, Sharpe etc didn't listen to patients & did their own thing anyway ARGH!!!!!)."

THAT IS COMPLETELY WRONG. I am surprised you make this statement . Action for ME were fully involved throughout with the PACE trial from 2004-2011. We still got the PACE trial fraud. I am really surprised you are claiming this as it completely rewrites history!!!!

In fact patients being involved give them credibility and authority for them to do the "research" and get funding. If we speak with one voice and don't not collaborate then they cannot claim that patients support this research fund. However as with PACE when AFME collaborated and colluded with the PACE trial psychs they actively harmed the whole worldwide ME community.

You say "no patient voice - no influence". In fact if we are united as ME patients against BPS psych bad science then the "no patient voice - no funding, no bad research, no fraudulent science".

Rest assured NO-ONE on MEGA (if funded of course) will NOT have properly defined PEM. All the PAG are passionately behind this. See the FAQ page here - item 3.

That can be proved as wrong. Esther Crawley has routinely shown she defines PEM as something else.
I am really surprised you claim that no-one on MEGA will not have properly defined PEM. in the PACE trial they could not even define ME properly.

I really think you should learn about the history of the politics of ME.

There is absolutely no need for MEGA and the CMRC as it is directly been set up to undermine the great work of InvestinME biomedical research and also undermine the London School of Hygiene Tropical Medicine UCL Biobank. That is its purpose.

The fact that the people involved with CMRC/MEGA cannot even define ME 50 years after it was recognised by the WHO show that the aim is to obfuscate the illness as they have done since the 1980s.

In my opinion anyone who collaborates with them is harming the prospects of biomedical research and treatments and is actively or unwittingly harming and causing needless and unnecessary suffering for everyone with ME.