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

https://valerieeliotsmith.com/2021/...ne-mecomms-and-the-case-for-a-public-inquiry/

Lots to think about. We desperately need both a new comms & PR initiative and a public inquiry.

 

Very interesting.

 

Just listening to the BBC Covid update from Downing st (earlier today there was also a discussion on the radio); any mention of long-covid seems to be being fobbed off as only applying to those who are badly affected by covid-19 (ie hospitalised), implying that those with long-covid who don't have 'organ damage' are not considered a problem.

The 'psychosomatic' lobby is clearly controlling the narrative; I think this will make any PR initiative in the ME community much harder.

 

There is however a very high profile on this, unlike ME/CFS ever has been, so it's possible things could be different.

 

Well, if this can be done in addition to everything else that is currently being done then I could live with it, but if it took away from the current efforts then I'm not convinced that there is sufficient value in diverting resources.

 

PR is a good idea. The ME Association and #MEAction have had some success with this, but it needs to be more than just ME Awareness Month and reactive things.

One of the biggest barriers we face as a community is the widespread negative attitude towards pwME. You only fix that if you change the narrative. You can't change the narrative without PR.

It might seem like taking money from biomedical research, but no one is doing much biomedical research because they're not getting the big funding. It's all little bitty projects here and there.

Patients crowdfunding isn't going to be how we get treatments. It's just a bandaid. It'll never be enough to get what we need done. It can only ever fund small things.

In order to get the big money, then, we need people to prioritise ME. That won't happen if everyone still thinks we're the 'undeserving sick'.

Moreover, the pots of money available for PR will be different than those available for research. There will be minimal overlap (it's mainly the crowdfunding thing where there may be some competition for resources).

It's at least worth giving something new a try. We've been doing what we've been doing for a long time and there's been minimal change on the research front. So why not try it for five years and see?

Recent PR efforts have had an impact. Long COVID has had loads of free PR, and we've seen some benefit from that. Unrest and the PR around it had some benefit. The press coverage the charities have started securing have shifted things a little bit. People like David Tuller are helping with the PR, too, even though that's not his primary goal.

Beyond research and media, there are all the other barriers: benefits assessors, doctors, teachers, social workers. Research isn't necessarily going to change opinions there. Doctors aren't always clued up and they don't always have access to the right training.

But those people read newspapers. They watch the news. They hear things via word of mouth.

These people have a huge say in the lives of pwME. They need to be shown positive stories of pwME working with researchers, humanising stories that are honest but sympathetic, stories where we seem like rational people with normal lives.

There's a story that's started bubbling through about how engaged, resourceful and self-taught we all are--how we're basically citizen scientists--and we need more of that rather than the 'militant patients' narrative.

I think we need to be proactive, not reactive; in control rather than on the defensive.

Making it happen will be hard. But I think it's doable.

 

The concrete proposal makes this one the best blog of the series.

Not sure about the inquiry. I think the priority should be to change the narrative and achieve a well funded biomedical science program.

One of the obstacles to a united patient community will be precisely the true ME crowd.

 

One thing you can be sure about, if this does start to gain traction, is the BPS crowd will start wittering on, as they always do when truth and reality looms, about "moving on" and to stop living in the past. They are right of course, except in what is meant by "moving on". To the BPS folk, moving on has nothing to do with the patient community, the medical profession, or science moving on to a better place. Instead it means the spotlight of justice moving on, to somewhere else other than on themselves. But they will do their usual sleight of words to make it sound so noble and just. But they must not be allowed to get away with it.

 

My goal is to look at the research and related activities, and push the journals/academics/agencies where I can for accuracy and proper methodology. In terms of "PR," Adam's right that that's not my primary goal or function, but I certainly hope others can use what I post or publish to good effect in making their case.

 

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 think there is something that clearly needs to be said, and that is the need for high quality and well funded biomedical research. It needs to be undeniably clear that this is what patients want. Let the funding bodies know what patients want, let the BPS lobby face the embarassment of rejection. It seems to me that a consensus among patient organizations saying no to any BPS research and calling for a biomedical focus would leave BPS people in a precarious political situation when attempting to obtain funding.

To get high quality research we also need to attract experienced researchers and that could be done by telling our own narrative of a poorly understood illnesses that needs solving and has unusual features like PEM.

 

One of things that needs to be addressed (& I'm not sure quite how) is this idea that having a debilitating illness where there aren't any definitive tests is a shirker's charter.

I don't know exactly when this idea arose but it is something that seems to be automatically assumed by many. It affects us particularly.

There's the assumption people just don't want to work, conveniently ignoring the fact many had enjoyable, well paid jobs. It's not just work we lose out on, it's life itself. Holidays, birthdays, Christmas & New Year, weddings, christenings, meals out with friends, going to the footie.....even those who manage to do some of these things only do so by missing out on many others.

Another is that disability that involves a fixed impairment is very different from an on going illness where not looking after yourself and managing the condition will make the person much worse.

How, depending on your diagnosis, your GP, employer & even family may turn their backs.

We don't necessarily need a scientific breakthrough to address those aspects of the problem.

 

I think the great success of the BPS PR machine is that to most people there is no awareness they are witnessing PR of any kind, it's invisible - they just perceive sincere good scientists striving hard for patients against the odds, with all those nasty militant activists trying to stop them; the notion they could be highly calculating incompetent PR-waging incompetent scientists never would occur to them. The BPS machine has likely realised that the best PR is when it is not evident.

There is no doubt they, in cahoots with the SMC, wage, and have been doing so for a long time, a very powerful and effective PR campaign, and are very skilled at it. And it is not likely to stop any time soon.

 

The suggestion of a unified comms & PR strategy seems a very sound one to me. The ME patient community is constantly being blindsided, while the very slick strategy with the SMC as its lynchpin has effectively shaped public & medical opinion and obviously discouraged clinicians and researchers from entering the field. The suggestion of a public inquiry - I would like to see one eventually, but we're a community with few resources and capabilities.

A couple of years into my own ME, a relative who previously seemed to have thought that I was probably just depressed or unmotivated saw a local news story about a young girl struggling with ME, and within days she was volunteering to take me to appointments and has remained in regular contact ever since. It's much harder to stigmatise patients as evil militants if media coverage humanises the condition sympathetically.

Professional comms specialists may seem like an unnecessary outlay when charities are so dependent on small donations from very sick people, but the NICE process coupled with the sudden public awareness of post-viral syndromes in the form of Long COVID is a singular opportunity. Allowing the SMC, KCL IoP etc to controversialise the guidelines and set the post-NICE narrative in the media unopposed would be a mistake. If there were a campaign to help fund this, I'd certainly donate to it.

What seems to me to be the most important course of action following the NICE guidelines is the provision of high-quality physician-led clinical services not beholden to any aetiological model. The perennial complaint of most ME patients on social media is "lack of funding for biomedical research", but this rarely occurs in isolation: the best research proposals depend on well-honed clinical observation & insight & curiosity, often over a prolonged period of time to observe patterns, triggers, patients with unusual presentations; in the absence of clinics run by open-minded, actively interested doctors, no such observations are ever made. We don't even have any hard data on patients' experiences of PEM, and there's no widely accepted severity scale to rival Chalder's. I've had half a dozen research ideas over the years based on my own ME symptoms, but no-one to suggest them to. When Drs Weir, Bansal etc retire even from private practice - is there anyone genuinely sympathetic to replace them?

I think it's underestimated just how powerful the clinical commissioners are in the CCG system established following the Health and Social Care Act 2012. There might also be a role for a unified, "cross-party" group to lobby more aggressively on the formation and direction of clinical services; this would have to be done in collaboration with patients in each CCG region. As a simple example, this woman, liaising with a charity, successfully lobbied her CCG to obtain greater access to IVF. Even Gerada suggested this strategy back in 2013, & informal lobbying from ME patients also resulted in a CCG in Wales placing ME patients in the COVID-19 vaccine group 6. Worth considering?

 

I totally agree with the comments I have selected above. In our Eastern region, we have been petitioning the movers and shakers within the CCG -having set a precedent in the pre Landsley days of liaising, petitioning and appealing to the 'Primary Care Trusts 'and 'Strategic Health Authorities'...). Well it worked for us more locally and I have hopes it may again soon.

Last week I was advised by the CCG that,

....."We haven’t been able to progress discussions in the last few months, and our response to the pandemic has been the main contributing factor. Next Monday (today) () and I are taking a paper which describes the opportunities for a clinically led integrated delivery model, potentially led by one or more of our () Alliances.

() and I will re-affirm the opportunities we have discussed extensively in the past and aim to secure colleague support to help re-design the pathway/service.".....

I have been keeping the CCG and other local forums informed of the twists & turns of the NICE developments and have shared our responses to it.
They will undoubtedly be looking to this soon for their validation ..... (of the right sort we hope!)

I have confidence in these officers and know they will do their very best to achieve a patient endorsed and co produced appropriate service if they can.
Only time will tell........

 

I think this is an interesting piece with some possibly good ideas. In my opinion though, the main problem isn't that people with ME have had their reputations tarnished, and therefore that needs to fixed with PR. I suspect such stereotypes of people with ME as crazy activists and harassers etc. carry less weight than you'd think, among the general public at least. I think the main issue is that people are being asked to break with their trust in institutions (medical and scientific) which they usually regard as working well and being trustworthy, in favour of patients that aren't "experts" with a fuzzy and not serious condition, which is basically how they view ME at baseline. I think the main issue is how you address that obstacle.

 

Yes this seems important and having the support of Doctors with ME and the IOM and similar groups is helpful to maintain credibility. There's a reason the BPS people always depict their critics as patients and don't acknowledge that other scientists are criticizing them as well.

I think there are also a lot of therapists and psychologists who don't like what White and colleagues are doing.

 

My personal experience goes against this when people who apparently previously thought I had MS, or some undiagnosed thing found out I had a diagnosis of ME. I have literally had people become verbally abusive and very aggressive.

However -

This is an excellent point.

 

Yep. We have to persuade everyone that this time those in authority got it wrong. I think it's doable. It's happening already in some quarters, e.g., with academics willing to speak up about the PACE trial and all its flaws.

People are increasingly willing to accept that major institutions can get it wrong.

Along with this, the major issue is that the illness still isn't taken seriously, or as seriously as it should be. There is still stigma.

 

Thank you to everyone for your comments. It's very helpful to hear your observations.

Of necessity, my proposal is on a very large scale. It will need a broad level of practical and moral support in the ME community - from individuals, patient groups and charities - to have any chance of success.

I appreciate the concerns of some members about increasing the competition for finite resources (although I believe that DecodeME's funding is secure). I addressed funding in my original proposal two years ago and, whilst the plan cannot be revenue-neutral, there are ways of mitigating its effects.

My argument is that we may not be making the most efficient and productive use of the resources that we have and that a re-evaluation is necessary. Whilst more and better research is long overdue, there are other obstacles to progress which are not being addressed effectively.

A few members clearly feel that we're doing OK at the moment and that we should simply continue as we are. Reflecting on decades of abuse and minimal long-term progress, I would suggest otherwise - hence my proposal. Whether or not the necessary support is forthcoming is another matter entirely.