[Blog] Beyond the NICE guideline: MEComms© and the case for a public inquiry

[Invisible Woman]

I agree a Public Inquiry would be hard, there is a big chance of failure (if there weren't would there be any need?), there are powerful & influential people against us etc. That includes the likes of the SMC, but because the likes of the SMC are included something at the kind of level of a public inquiry is needed, I think.

Is now the best time to look at this? I don't know. Will there ever be a good time?

Was there ever a Public Inquiry into how AIDS & HIV patients were treated & stigmatized back in the day? Or MS patients? No & we could argue because it wasn't needed due to the progress in technology, research and understanding. Today's backdrop is very different. Apart from certain important studies such as DecodeME research isn't moving forward, it's moving backward & will continue to do so with IAPT & MUS trapping more hapless victims into it's net.

Perhaps if there had been inquiries into how previously maligned and stigmatized patient groups were treated we wouldn't need one today.

The BPS movement is like a weed. By the time we see bits and tackle them the roots have already spread and the next stage plants burgeoning. To get at the root of the problem we need to go higher up.

High enough to make a difference and an impact on bias from the SMC and undue media influence, plus on all.the agencies involved.

What other options are there, apart from a PI?

 

[CRG]

What other options are there, apart from a PI?

I think the start would be to state precisely what objectives are being sought. From that we get potentially different ways of doing things, but also how those ways may conflict.

This is what VES wrote:

"A new and robust strategy is required, aimed at addressing the historical damage caused to members of the patient community, collectively and individually, by a psychiatric lobby which frequently promotes its own interests above that of patients."

A PR strategy and PI are then proposed to service this objective. The notable thing there is that the proposal regarding PR made in a previous blog https://valerieeliotsmith.com/2021/...e-need-for-a-communications-strategy-rethink/ has merit quite separate from pursuit of a PI.

Set that way around (which is actually how VES presents it), a multi organisation supported strategy might eschew a PI because on PR grounds it is not optimal. In fact without an agreement on comms between several patient organisations there is no hope of progress, so it is essential that the part of the process come first and if things fall apart at that stage anything else wasn't going to work anyway.

If a comms agreement could be reached, if funding for professional PR input could be agreed, if management of that could be agreed, then clear PR objectives could be set, and that would define the way forward. A PI or alternatives would be considered relative to 'then' known available resources and agreed objectives.

It may of course be that the agreed objectives would not include ".... addressing the historical damage caused to members of the patient community, collectively and individually, by a psychiatric lobby which frequently promotes its own interests above that of patients." and the merits of a PI would be judged on different criteria.

To have reality this now needs to be taken to relevant organisations for them to at least start internal conversations. Forum members with 'connections' might want to take soundings ?

 

[Invisible Woman]

I think the start would be to state precisely what objectives are being sought. From that we get potentially different ways of doing things, but also how those ways may conflict.

Yes, I agree.

I also agree that we might get a little further down the line and be prepared to be flexible enough to change tactics as need be. It might well be that a sensible conclusion would be to consider a PI at a later date but the collaboration & work up to that point will still be necessary to reach that stage.

".... addressing the historical damage caused to members of the patient community, collectively and individually, by a psychiatric lobby which frequently promotes its own interests above that of patients."

One day this must happen or history will repeat itself ad infinitum. If I were cured of ME tomorrow & could hop into my car & go back to work I would still support doing this in whatever way I could. Too much suffering, too many deaths to let this go forever.

 

[TiredSam]

It would be nice to have more impact but you have to have something to say.

Trying to agree what it is various PWME and their organisations want to say could be a divisive nightmare. Arguing about definitions with the "true ME" brigade? People attributing causes or views on "what is known" which others aren't comfortable with?

Secondly, if there is any success at the first step, then skirmishing, or even out right warfare at media and political arenas will likely be joined. There are plenty of combinations for this but one can imagine Government sending out the dogs to shut the whole thing down on the grounds that no examination of Health policy can be in its interest, while the SMC would seem obligated to become involved, the right wing media being both the SMC's and (the present) Government's most likely allies.

I have concerns about trying to beat the BPS brigade at their own game. We might win the first round, because they haven't had to be any better than fairly crap at PR so far because they haven't had any fair competition yet, but you can bet that after round 1 they'll go professional and get lawyered up for round 2. So far we have concentrated on the science, which has been a long and slow process, but the PR situation is already vastly different from when I became ill 7 years ago, when we never got a word in and the SMC controlled the narrative in the national newspapers and the BBC. Now we get whole articles without a mention of the psych narrative and the phrase "now discredited PACE Trial" is becoming commonplace.

And what happens if we start winning the PR war? Then the BPS brigade get to switch positions and play the victim of a vicious PR campaign, and they'll be able to point at our PR machine as proof. Do we really want to spend our time and energy getting down in the mud with them playing them at their own game?

The bottom line as I see it is that public enquiries mostly whitewash the status quo and that would be a serious own goal. Even when they are critical nothing gets done in the present political climate. We had the HRA assessment of PACE and it was whitewashed. Cochrane is a whitewash. Why would an official enquiry be different?

Can we be realistic and say "first public enquiry"? The Hillsborough disaster had the Original Inquests, Taylor Inquiry, the Stuart-Smith investigation, the Hillsborough Independent Panel, the Second Coroner's Hearing, the Independent Police Complaints Commission Investigation, and finally the prosecutions. All spread over 30 years, during which time the families of those affected grew old and died having had half their lives consumed in a quest for justice, and those responsible grew old and retired on pensions, and were all finally acquitted in their prosecutions.

So let's be realistic. A public inquiry is not a one-off event which we work towards, win, and reap the benefits of. You need to settle in to a decades long draining chain of events with a very uncertain outcome, and even if you win, so what? The results which should follow do not automatically follow. And we would not need to finance a one-off action, we'd need to find the money to keep financing increasing costs over decades.

I have an interest in Hillsborough because it was obvious to me who was responsible when I read the transcripts of the police control room and watched the police videos of the piles of dead bodies in my first weeks as a trainee solicitor in 1989. My boss was at the Taylor inquiry. As plain as a pikestaff who was to blame. As obvious as it is to me how guilty the BPS brigade and their shinanegans are for our current situation. But so what? I just don't buy the just world fallacy that they're all gonna be sorry some day. Likely as not the BPS brigade will never be called to account and will take their fat pensions and knighthoods to their grave. When were psychologists ever called to account for all the damage they've done since Freud onwards?

If some PR expert wants to help out pro bono then great, but getting lawyers and PR people involved when we don't even know what our brief is? Going to a lawyer is rarely a clear solution to anything, because the other side just goes to their lawyer who surprisingly has completely the opposite opinion to your lawyer, so you both just end up paying lawyers to argue about it for a few years until you've had enough and settle somewhere in the middle, or end up in court, which is a complete gamble, and if you don't get the result you want do you throw good money after bad for an expensive appeal or retire to lick your wounds and a horrendous bill for costs?

We have discussed many times on this forum how the system for scientific research and publication are completely broken. Does anyone seriously think the legal system in the UK is any better? The very idea of going legal at this stage makes me shudder.

 

[TiredSam]

@Valerie Eliot Smith can I ask why

MEComms©

is copyrighted already?

 

[CRG]

And we would not need to finance a one-off action, we'd need to find the money to keep financing increasing costs over decades.

Your post. Yes . One slight disagreement, re: costs. Legislation* provides for those contributing to an Inquiry to be re-imbursed including for legal representation, however costs are at the discretion of the Inquiry panel and you are quite right that there would almost certainly be ongoing costs for any meaningful campaign, costs which short term funded orgs (most patient orgs have less than 3 years financial certainty) would need to think about carefully. Relying on serial crowd funding might be thought poor planning.

* https://www.legislation.gov.uk/uksi/2006/1838/made

 

[JemPD]

Trying to agree what it is various PWME and their organisations want to say could be a divisive nightmare. Arguing about definitions with the "true ME" brigade? People attributing causes or views on "what is known" which others aren't comfortable with?

Quite. The idea of it makes me cringe.

From The link in the OP

1. Construct a positive, accurate narrative, with a particular emphasis on proactive dissemination of information, and counter misinformation as necessary

My bolding.

This is something that concerns me greatly. Who's going to decide what 'accurate' is. I'm not critisising @Valerie Eliot Smith for linking to the sources that she does for further info into 'what is ME?" , thats a personal choice that we all have to make, but i worry that a source with Dr Mikovits saying, in a prominent position on the front page, that ""It is an acquired immune deficiency, beyond a shadow of a doubt." Dr. Judy Mikovitz" isnt terribly helpful.

Because I'm unaware of any sound evidence proving it to be an 'acquired immune deficiency', particularly without a 'shadow of a doubt'. And i think statements like that which overegg the biomedical evidence just dont help. (Edited to add - & i realise that plenty of people would disagree with me on that & indeed whether it is an 'overegging', - & it's that lack of agreement/consensus which strikes me as being at the heart of the problem).

It's just my opinion, but i think attempting to do any kind of inquiry now before we do have 'beyond shadow of doubt' evidence, will just end up being a giant own goal....

If there is something specific to say or to establish that has not already been said or established I can see PR being useful. The problem for me comes with the introduction of 'ME, the complex, multi systemic neuroimmune disease'. To change the narrative usefully it needs to change from that.

Complex in medicine mostly means with psychological overlay.
Multisystemic does not exist as a medical term as far as I know. We talk of multi system diseases affecting several systems but this does not apply to ME. systemic just means spread to the whole body via the blood and we don't know that either.
Neuroimmune does not mean anything much. Multiple sclerosis is neurological and immunological but 'neuroimmune' is only used in situations where people don't actually know if it is.

I actually think that the S4ME community, either together or as individuals has taken advantage of pretty well all the opportunities recently. I am unclear what more is needed or helpful. It would be nice to have more impact but you have to have something to say.

I can understand the desire for a public enquiry but maybe it is worth warning people that it might produce the opposite of the desired effect.

The bottom line as I see it is that public enquiries mostly whitewash the status quo and that would be a serious own goal.

I agree with Jonathan here.
You've only got to look at the judicial review of the 2007 NICE GL to look at how that can happen

Sadly I have to agree. I was a bit shocked when presented with evidence that public inquiries can be set up to provide a certain outcome. I wouldn't rule out an inquiry finding that the establishment behaved responsibly. Look at the Lancet; I'm an outsider, but the Lancet looks like bona fide establishment and they defend PACE! In a competition of who has more influential friends I wouldn't bet on the ME/CFS community versus the Lancet mob. Most people don't have family/friends, --- affected so they aren't going to invest time/effort in understanding the issue, they'll just go with the establishment//media. Politicians chief preoccupation is getting re-elected so many will just go with the votes --- not necessarily us.

Indeed

 

[Hoopoe]

I agree, the ME/CFS community needs to first get over its internal divisions and show more humility. Then collaboration becomes possible.

I suspect that some have no interest in doing this, looking down on others who use terms like ME/CFS.

If there ever was a time to be pragmatic, this would be it. If you ask me, ME/CFS is an umbrella term for different problems and I suspect the only chance many of us have to see it solved in our lifetime is to stop being so protective and inward looking and start collaborating towards solving the puzzle for everyone involved. The more pieces we can figure out, the fast the solutions will come for the rest. The puzzle gets simpler the fewer pieces remain.

 

[Invisible Woman]

And i think statements like that which overegg the biomedical evidence just dont help.

I completely agree. Stating something as though there is high quality evidence for it where there isn't does us no favours.

 

[Invisible Woman]

I agree, the ME/CFS community needs to first get over its internal divisions and show more humility. Then collaboration becomes possible.

I suspect that some have no interest in doing this, looking down on others who use terms like ME/CFS.

If there ever was a time to be pragmatic, this would be it. If you ask me, ME/CFS is an umbrella term for different problems and I suspect the only chance many of us have to see it solved in our lifetime is to stop being so protective and inward looking and start collaborating towards solving the puzzle for everyone involved. The more pieces we can figure out, the fast the solutions will come for the rest. The puzzle gets simpler the fewer pieces remain.

If I recall correctly VES called for a unified approach & not necessarily a united one.

I think I unified approach is probably the best we can hope for & that various groups put aside their differences to work toward a common goal. I'm not even sure we can achieve that to be honest.

I don't see the rifts closing any time soon unless something happens to close them like some clear scientific breakthrough.

 

[JemPD]

I also wanted to add that i respect @Valerie Eliot Smith 's work hugely, and all her hard work & efforts over the years is staggering & much appreciated. I wish she wasnt a sufferer, but i'm certainly glad to have her in our corner!

 

[Barry]

I would think any public enquiry would be some time into the future. There would be a lot of groundwork to be laid, not so much with that as an aim, but more as secondary benefit of improving public understanding.

 

[Sarah]

@Valerie Eliot Smith can I ask why

MEComms©

is copyrighted already?

I'd be interested in the answer to this. So far as I know, it isn't possible to claim copyright in relation to names; I would have thought trademark would be the appropriate form of intellectual property right.

If the intention is to flag that the idea for forming a coalition comprised of patient groups with the object of instigating a ME/CFS pr initiative is copyrighted, so far as I'm aware ideas aren't subject to copyright either. Ianal and might be slipping up or missing what is intended.

 

[Sbag]

Was there ever a Public Inquiry into how AIDS & HIV patients were treated & stigmatized back in the day? Or MS patients? No & we could argue because it wasn't needed due to the progress in technology, research and understanding.

I think the difference here would be that these people with these other illnesses were not treated with techniques that were produced in a deceptive manner (PACE).

The enquiry would probably need to have a desired outcome rather than just getting people to understand how unfairly PWME were treated. If it focused on those that were harmed due to treatment as a result of PACE then it might be a good argument.

It would stand a better chance now than when this has been raised in the past, because of the work that was done dismantling the study, and the fact that organisations have now agreed that the trial was flawed and should not be used as a basis for treatment.

ETA - it could also focus on how the treatments and the misconception that it was a psychological illness meant it was extremely hard for people to claim any type of support. Even though the guidelines are being changed this is still an ongoing issue and will be until the messaging filters down through the agencies. An enquiry, if successful would cement the new messaging around ME and give people an increased chance of claiming on insurance or benefits etc.

 

[Peter T]

I wonder if it is worth asking whether we might be more successful fighting for the narrative internationally or on British stage.

Undoubtedly the BPS cult has its heart in the UK academic/medical establishment and a positive outcome in a UK public enquiry as a head on confrontation might have an impact across the world, but alternatively it might be more feasible to continue to address the issues through individual battles for national guidelines, for Cochrane, for more biomedical research funding, ultimately leaving Wesseley, White, etc marginalised and out of step internationally.

 

[Dx Revision Watch]

I agree it would be good to have more unified and effective press briefings. I think there is more coming together of ME organisations happening gradually, and undoubtedly the new NICE guideline is an important focal point.

I don't know what Foward ME are planning on this if anything. It's possible that with their new chair they may become more proactive. Membership of Forward ME seems to be by invitation with some very small and unrepresentative organisations included, and some larger ones not. That needs changing. MEActionUK, Doctors with ME, S4ME should all be represented...

MEActionUK were members of Forward-ME.

They were kicked out by the Countess of Mar after the joint letter "Forward-ME Position Statement: Spinal Surgery and ME, 30 September 2020" was issued (which was subsequently replaced with a revised version with the MEActionUK logo and listing redacted):

Initial statement (06.10.20): https://dxrevisionwatch.files.wordp...-statement-spinal-surgery-and-me-06.10.20.pdf

Revised statement (15.10.20): http://forward-me.co.uk/assets/imag...-Statement-Spinal-Surgery-and-ME-15-10-20.pdf

 

[TiredSam]

Judicial Review Bill being introduced to parliament today:

https://www.lawgazette.co.uk/news/r...fence+|+How+a+right+becomes+a+cost_07/21/2021

 

[Amw66]

Judicial Review Bill being introduced to parliament today:

https://www.lawgazette.co.uk/news/ringing-alarm-bells-concern-mounts-over-judicial-review-bill/5109301.article?utm_source=gazette_newsletter&utm_medium=email&utm_campaign=JR+review+bill+'rings+alarm+bells'+|+Partners+of+fraudster+allowed+defence+|+How+a+right+becomes+a+cost_07/21/2021

There ia a much older playbook being used here. Far more concerning.