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

Edit - just to note that I cross posted with Valerie - the sequence maybe makes this look a bit passive/aggressive or otherwise unfriendly. Absolutely not my intention

VES has made many important contributions in her blog and on patient forums in the past, her writing is always clear and well argued. On this occasion I disagree with her.

1. The various patient organisations have arrived at an effective model of co-operation; embarking on a resource intensive PR 'marriage' at this time will likely produce substantial strain on relationships that are currently working well.

2. That a successful co-operative effort re: the NICE guidelines should offer a springboard for a more cohesive long term approach is clearly true - however this doesn't take account of what the cost (on finances and upon individuals !) of the work of the last several years, latterly in the face of a pandemic, has been.

3. Public Inquiry: The patient orgs would need to make a full cost/benefit assessment. What is it that is expected from such an exercise at this time ? These processes can take years, can achieve very little attention, change little in practice and can be out of date by the time they come to a conclusion. And 'going after' the NHS when its staff and management are frazzled by COVID and facing a possible further decade of of austerity, seems to me very unwise even if it is morally warranted.

4. PR professionals: Again what are the cost/benefits here ? In terms of health campaigning, effectiveness often relies on consistency of message made over a sustained period, is the idea that an individual/company will advise on strategy or are they to execute campaigns ? And it is a business that is frequently more concerned with appearance over substance and attracts characters who mirror that, and there are plenty of sharks out there.

5. The context: 18th August may see a significant 'win' for ME/CFS advocacy - what, in the interest of patients, is the best use of that 'win' ? Magnanimity in victory can be better way to gain long term support than continued war, I would suggest the best way forward would be sympathetic engagement with the NHS at a time when all its services are under stress - making the case for ME/CFS patients to be taken seriously and for services to be provided that actually meet need as expressed by patients and the experts that support them.

Then there is the Decode ME study - this is a potential game changer and as a piece of research should be a high profile positive focus of ME/CFS advocacy. Pursuing a 'negative' "isn't this terrible" type story which is what almost all Public Inquiries translate to https://en.wikipedia.org/wiki/Category:Public_inquiries_in_the_United_Kingdom . My heart sinks at the though of being reduced to yet another 'victim horror story'.


In summary my negative take is as much to do with timing as anything else, although resources, both human and financial, are a major concern.

Good intro to Public Inquiries: https://www.instituteforgovernment.org.uk/explainers/public-inquiries
 
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CRG said:
Edit - just to note that I cross posted with Valery - the sequence maybe makes this look a bit passive/aggressive or otherwise unfriendly. Absolutely not my intention

VES has made many important contributions in her blog and on patient forums in the past, her writing is always clear and well argued. On this occasion I disagree with her.

1. The various patient organisations have arrived at an effective model of co-operation; embarking on a resource intensive PR 'marriage' at this time will likely produce substantial strain on relationships that are currently working well.

2. That a successful co-operative effort re: the NICE guidelines should offer a springboard for a more cohesive long term approach is clearly true - however this doesn't take account of what the cost (on finances and upon individuals !) of the work of the last several years, latterly in the face of a pandemic, has been.

3. Public Inquiry: The patient orgs would need to make a full cost/benefit assessment. What is it that is expected from such an exercise at this time ? These processes can take years, can achieve very little attention, change little in practice and can be out of date by the time they come to a conclusion. And 'going after' the NHS when its staff and management are frazzled by COVID and facing a possible further decade of of austerity, seems to me very unwise even if it is morally warranted.

4. PR professionals: Again what are the cost/benefits here ? In terms of health campaigning, effectiveness often relies on consistency of message made over a sustained period, is the idea that an individual/company will advise on strategy or are they to execute campaigns ? And it is a business that is frequently more concerned with appearance over substance and attracts characters who mirror that, and there are plenty of sharks out there.

5. The context: 18th August may see a significant 'win' for ME/CFS advocacy - what, in the interest of patients, is the best use of that 'win' ? Magnanimity in victory can be better way to gain long term support than continued war, I would suggest the best way forward would be sympathetic engagement with the NHS at a time when all its services are under stress - making the case for ME/CFS patients to be taken seriously and for services to be provided that actually meet need as expressed by patients and the experts that support them.

Then there is the Decode ME study - this is a potential game changer and as a piece of research should be a high profile positive focus of ME/CFS advocacy. Pursuing a 'negative' "isn't this terrible" type story which is what almost all Public Inquiries translate to https://en.wikipedia.org/wiki/Category:Public_inquiries_in_the_United_Kingdom . My heart sinks at the though of being reduced to yet another 'victim horror story'.


In summary my negative take is as much to do with timing as anything else, although resources, both human and financial, are a major concern.

Good intro to Public Inquiries: https://www.instituteforgovernment.org.uk/explainers/public-inquiries
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Our posts crossed, CRG. Apologies for that and thank you for your comments.

At this stage, my proposal is an initial outline of what would become a much more detailed strategy, if it were to be pursued. There are, of course, many more questions to be answered in due course.

Other than that, I have nothing further to add.

ETA: not perceiving anything as passive-aggressive - but likewise, and thank you.
 
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I think a Comms&PR initiative could be patient-led to begin with, with support from advocacy groups, patient communities, charities, and other formal bodies. At some stage early on it would need funding and professional guidance and help.

We have thought about this as the CMRC PAG. We have a Comms&PR subgroup, and such a proposal has come up numerous times. Of course, we're all limited in what we can do.

With regards to a Public Inquiry, the most obvious channel to pursue this is via the APPG for ME, who have published at least two inquiries (not 'Public Inquiries'). That group is most attached to ForwardME, which is now under new leadership.
 
CRG said:
And 'going after' the NHS when its staff and management are frazzled by COVID and facing a possible further decade of of austerity, seems to me very unwise even if it is morally warranted.
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CRG said:
I would suggest the best way forward would be sympathetic engagement with the NHS at a time when all its services are under stress - making the case for ME/CFS patients to be taken seriously and for services to be provided that actually meet need as expressed by patients and the experts that support them.
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Perhaps I'm in a minority but I don't see any need to "go after" the NHS. For me this idea that ME patients are all anti- NHS or anti- doctors is on a par with us being anti-science.

As someone who has had bad experiences at the hands of NHS personnel thanks to.my diagnosis, I believe that NHS staff are also victims of the ME misinformation campaign & many will be horrified when the day finally dawns that they realise the suffering the advice they've given has caused.

I would argue that a properly run campaign, along with education being spearheaded by the likes of Nina Muirhead and Doctors with ME, would serve to help the NHS be more effective when treating ME patients.
 
Invisible Woman said:
Perhaps I'm in a minority but I don't see any need to "go after" the NHS. For me this idea that ME patients are all anti- NHS or anti- doctors is on a par with us being anti-science.
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Sorry if that seems implied - I was referring to the impact of a Public Inquiry, it would necessarily place parts of the NHS under intense examination and that will likely produce a sense among many in the NHS that "here is yet another attack on us" even though that is not what we would want the PI to be about. I'm certainly not arguing ME advocacy groups shouldn't be engaging with the NHS and seeking a far better reception (if not treatment) for ME/CFS patients, I'm just concerned that a PI would take on a life of its own and fire up divisions between staff and patients rather than develop the partnerships we need.
 
CRG said:
I'm just concerned that a PI would take on a life of its own and fire up divisions between staff and patients rather than develop the partnerships we need.
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Sooner or later this will have to be addressed though. I agree it is something that woukd have to be handled well & possibly this is where involving professionals come in.

The reality is the treatment the NHS delivers is based on information provided about efficacy, safety, value for money and training provided to staff.

If any part of that information is wrong then this can and should be highlighted.

If these issues cannot ever be addressed then the NHS is doomed because rather than fixing what's wrong bits of it will be continue to be replaced by private medical services.

If an organisation can't handle feedback from an open process like a PI then there are even bigger problems lurking under the surface.
 
A judge-led public inquiry with a wide-ranging scope and full statutory powers is long overdue for the ME patient community in the UK. Such an inquiry would be the most effective way of acknowledging the decades of shocking treatment of patients and, belatedly, making appropriate recommendations to rectify the situation.
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This.

Including the critical issue of alleged 'harassment and threats' claim. Rip the covers off it and see what is really behind it.

strategist said:
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.
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I think they go hand-in-hand.
 
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.

On the subject of legal action, I agree that in an ideal world there would be a public inquiry, but as others have said, this is expensive, uncertain in outcome and very slow.

If some large project were to be planned I would prefer the effort be put into medical education and finding ways to ensure provision of medical and care services is more appropriate to patients' needs, more along the lines of what is provided for other long term diseases such as MS. As we said in our submission to NICE, this doesn't mean keeping current therapist based fatigue clinics and telling therapists to make minor changes to their practice, it means designing a new fit for purpose provision based on a medical model with medical consultants and probably specialist nurses. The other therapies (psych, physio and OT, and dieticians) should only be available on the basis of individual need.

We also need the UK funding bodies to stop funding BPS based research, and recognise that that is now a dead end, with none of their therapies being effective.

Looking back at how we got into this awful (and currently ongoing) state where BPS and things like LP are seen as appropriate and the only things provided is very important, and I agree a public inquiry would be important, but I think it would be more likely to succeed if a new model of care is already in place in at least some areas, so that the argument that CBT/GET is all we've got, helps some people(!) and therefore worthwhile, can be knocked on the head.
 
Trish said:
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.

On the subject of legal action, I agree that in an ideal world there would be a public inquiry, but as others have said, this is expensive, uncertain in outcome and very slow.

If some large project were to be planned I would prefer the effort be put into medical education and finding ways to ensure provision of medical and care services is more appropriate to patients' needs, more along the lines of what is provided for other long term diseases such as MS. As we said in our submission to NICE, this doesn't mean keeping current therapist based fatigue clinics and telling therapists to make minor changes to their practice, it means designing a new fit for purpose provision based on a medical model with medical consultants and probably specialist nurses. The other therapies (psych, physio and OT, and dieticians) should only be available on the basis of individual need.

We also need the UK funding bodies to stop funding BPS based research, and recognise that that is now a dead end, with none of their therapies being effective.

Looking back at how we got into this awful (and currently ongoing) state where BPS and things like LP are seen as appropriate and the only things provided is very important, and I agree a public inquiry would be important, but I think it would be more likely to succeed if a new model of care is already in place in at least some areas, so that the argument that CBT/GET is all we've got, helps some people(!) and therefore worthwhile, can be knocked on the head.
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Yes, what @Trish said.
 
I agree that having appropriate medical education and services in place are a priority.

This is only one aspect of life with ME though and how those services come about and are implemented in the field is dependant on a lot of politics that filter down from above.

When we look at the organisations needed to support the new patient, be they adult or paediatric, I think a something is needed much higher up the food chain. For example -

Social services adult and child
NHS - hospital staff - not just specialists, nurses & physios but also OTs & Speech therapists depending on severity.
CCGs who work for the NHS but are not the NHS
The Dept of Education
Benefits Agency
Employers
Insurance companies.

The new NICE guidelines are hugely important but we could still be a long way away from any effective treatment &, as we have discussed elsewhere, there is every likelihood that some will simply rebrand & repackage while carrying on treating patients exactly as they have done before.

In some ways NHS, CCGs and DWP and Social Services could be seen as tools being wielded by others with vested interests in how patients whose diagnosis must currently be made without definitive test results are treated.
 
Trish said:
I don't know what Forward 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.
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MEAction U.K.
https://www.meaction.net/2020/10/20/meaction-uks-membership-of-forward-me/


So, how to get invited to join Forward-ME?

Would an organisation be invited if they wrote to the Chair putting a case forward for them to be considered? Ask for their request to be brought to a meeting to be voted on by the full membership?

Or should one ask known members to ‘lobby’ for their inclusion?
 
Sean said:
strategist said:
The concrete proposal makes this one the best blog of the series.

Not sure about the inquiry..
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I think they go hand-in-hand.
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Going for an inquiry would inevitably define any PR strategy.

First order of battle would be the garnering of media and political support, the former if achieved having a symbiotic (or parasitic !) influence on further iterations of the strategy.

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.

Thirdly, assuming success at the second stage, and HMG agrees to a Public Inquiry(PI) then the strategy would need to ensure that the 'ME patient voice' has validity as a PI contributor in the eyes of the media and politicians, no point being there to be sidelined or denigrated. How this works will be limited by the expectations of supporting media -for example do they want a plucky victim story, which is their preferred go to with health issues ? Can't tell them to go to hell with such nonsense because by this stage you are in a Faustian pact.

Fourthly there is the long grind of the PI - having to keep it front and centre of media and political interest for months, years ?

Finally there is the 'report' and the battle for ownership of the narrative. Who the other contenders would be is difficult to enumerate, all opposition may have faded away, which in itself would be a problem, to keep media interest you need bad guys and if they've all run off to Trappist retirement the PI could be a damp squib. If HMG has allowed the PI but wants to devalue its outcome then there is an unequal battle for the narrative, and the SMC and friends may well stay invested to the bitter end. At this point the media and political battle is critical - fail to win here and the report becomes just more paper in the archives.

Of course truth and decency may win the day, all the effort may prove to be worth it. But ... a sustained PR campaign has to be focussed and it will be very challenging to meet the demands of a campaign centred on a PI and at the same time get attention for issues relating to the day to day concerns of pwME, research developments etc.

It's not a matter of 'don't do this' but if you are going to do it, do so with your eyes open, understand what is involved, what the costs are, and importantly who you are going to be bedding down with, or who you are asking others to bed down with !
 
I certainly don't think it is going to be plain sailing. Nothing about the politics of ME is. Quite the contrary, short of a major breakthrough in the biomedical side, this is potentially the biggest threat to our opponents, so I have no doubt they will move heaven and earth to prevent an inquiry, or rig it if they can't stop it.

But until the real story behind this vicious smear campaign is exposed, we will be permanently and seriously handicapped by it.

So, to be honest, I don't think we have much choice. It is only a top level inquiry that will have any credibility. Anything less just becomes a he said, she said scenario. Especially in the media.

And of course our opponents will be noting all this discussion, and moving to preempt it or control the outcome. That is a given.

Which means it may be time to make discussion of this issue private until we have a detailed proposal ready to go.
 
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.

If an enquiry is set up by sympathetic people and advised by sympathetic people it will simply be dismissed as further activism. It will go the way of the Gibson report that nobody took any notice of.

If an enquiry makes genuine efforts to recruit disinterested parties and get advice from disinterested parties how do yo find disinterested parties who do not conclude that the BPS crowd were just doing their best?

Disinterested parties that are prepared to get involved in this sort of debate are pretty hard to come by. I might suggest that in fact in the UK there is only me. Goodness knows why I have spent time on this and nobody else but everyone else I see involved has an interest in treating or being treated for ME.

The Information Officer who presided over Alem's FOI request did a good job but he did not pick himself for this topic. How do you pick someone like that for a public enquiry and who picks?

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?
 
Jonathan Edwards said:
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.

If an enquiry is set up by sympathetic people and advised by sympathetic people it will simply be dismissed as further activism. It will go the way of the Gibson report that nobody took any notice of.

If an enquiry makes genuine efforts to recruit disinterested parties and get advice from disinterested parties how do yo find disinterested parties who do not conclude that the BPS crowd were just doing their best?

Disinterested parties that are prepared to get involved in this sort of debate are pretty hard to come by. I might suggest that in fact in the UK there is only me. Goodness knows why I have spent time on this and nobody else but everyone else I see involved has an interest in treating or being treated for ME.

The Information Officer who presided over Alem's FOI request did a good job but he did not pick himself for this topic. How do you pick someone like that for a public enquiry and who picks?

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?
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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.
EDIT - and who cares about the outcome of a public inquiry --- just us and we already care.
I could be wrong of course.
 
chrisb said:
If people want a public enquiry , what do they want the proposed terms of reference to be?
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The question I think has to be somewhat more complex because what is being asked for is a Public Relations effort and a Public Inquiry, so that the terms of one necessarily define the other and vice versa. We might begin by asking what is the expected outcome of these symbiotic efforts and from that should come the hoped for terms of reference - which of course would be set by some authority.

But - yes folks need to be clear what they are seeking, and what the practicalities are. This isn't a simple plan for one organisation, this is asking several different organisations to pool not only financial resources but to subsume their individual campaign directions into a common project which has uncertain outcomes that demand agility of response and which maybe divergent from each organisation's stated aims.


"The purpose of public inquiries has been much debated over the years. Discussions peaked around the passage of the Inquiries Act 2005; this legislation has determined the form and style of almost every inquiry since.

According to the former Department of Constitutional Affairs – and the Ministry of Justice which replaced it – the Government considers “preventing recurrence” to be the primary purpose of public inquiries.

Jason Beer QC, the UK’s leading authority on public inquiries, argues that the main function of inquiries is to address three key questions:

  1. What happened?
  2. Why did it happen and who is to blame?
  3. What can be done to prevent this happening again?
All inquiries start by looking at what happened. They do this by collecting evidence, analysing documents and examining witness testimonies.

Inquiries then often draw on experts and policy professionals to help them form recommendations. These are intended to guide the Government and others to make the changes which will prevent recurrence. Between 1990 and 2017 46 inquiries made 2,791 recommendations."​
 
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