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

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?

 

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 ?

 

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.

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.

 

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?

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?

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.

 

@Valerie Eliot Smith can I ask why

is copyrighted already?

 

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

 

Quite. The idea of it makes me cringe.

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....

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

Indeed

 

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.

 

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

 

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.

 

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!

 

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.

 

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.

 

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.

 

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.

 

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

 

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

 

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