What do people want me to ask Sonya Chowdhury on Friday

Unfortunately, we challenge people too much. Which is what's needed, but so far it has mostly ended up poorly. Most researchers don't seem to want to be challenged when dealing with patients. They expect a teacher-students type of thing, where they talk and we nod in unison and thank them for their wit. So far it has mostly reinforced their positions, e.g. Hilda Bastian and Sarah Tyson.

Medicine's typical echo chambers can't stand criticism. Which explains a lot. It takes mavericks to withstand that, and typically those mavericks are never influential precisely because they don't kowtow to hierarchy and tradition.

 

Even people dying don't seem to matter. Early in the pandemic, some experts scoffed at the notion that 10K people would die from COVID. Officially we're at 7M+ worldwide, probably closer to the 20M range.

In the US 10K is how many die every two months now. It's completely memory-holed and the people who scoffed at this many total deaths are having victory parties for being right all along, all of them still having the same influence they had, able to repeat it again in the future. New deaths are scary. Then it quickly becomes normal, even something that must continue indefinitely.

The only way governments will care is costs. Until they see the cost-benefit analysis of giving a damn being positive, they're going to heed the advice of their medical officers and do nothing. And they are getting this advice because the belief in the medical profession is that it's not worth trying to solve it because they won't find anything. You know, the very thing they accuse us of: they can, but they think they can't so they don't try.

 

Thanks to everyone for all the suggestions and by all means keep them coming.

My approach to the meetings more than anything to see what we have in common. I don't want to try to persuade Sonya of anything and certainly not tell her what AfME should be doing. If we find we have a lot of common ground we can also, maybe later, discuss where we see things differently and argue our cases, but that is not in my mind just now.

For me the motivation for the meeting might be summarised as trying to make sure that if there are ways that we can make Sonya's job easier, or that Sonya could make our job easier, we are not missing out on opportunities because we are not talking to each other. If, for instance, Trish's letter made it easier for Sonya to say no thanks to the Gladwell project, which might well have been the case, then we want more of that. If the World ME Alliance would benefit from a link to an online discussion forum about the science maybe we could make that possible. Maybe if Sonya feels she has no route available to her to get answers to the problem of feeding support for the very severe then we can share thoughts on why the communication lines are down and what could be a way to deal with that.

I don't think we can expect Sonya to know how to advance the research. It isn't her field of expertise. S4ME probably had more people on the Government Research Working Group than AfME. If anything it is our job, even if we don't get paid for it. Sonya's personal job is to highlight ME/CFS in the public consciousness and I think she does that with great skill and empathy. It is always good to have people with different skills attacking a problem in different ways, maybe saying different things, but it is worth making sure that in the process they don't make things difficult for each other. The idea is to make sure we aren't.

 

If there is enough common ground, and making an offer around possible closer collaboration in future…

I wonder if Sonya would be wary of getting any more involved with S4ME because she sees lots of threads of people being super blunt and undiplomatic in their disagreements with each other, or more specifically about ME charity work.

Perhaps all the time and effort people have gone to trying multiple ways to reach out or influence things in terms of better healthcare and more effective advocacy before extreme frustration sets in isn’t so visible.

Also perhaps the long hours of incredibly tedious and repetitive work that goes into breaking down and analysis of the specific problems that exist across the board in the ME realm done collectively by members isn’t so obvious.

But if any of that’s the case, maybe you might be able to point to the many excellent letters from Trish and the forum committee, and how many of these do trace back to beginnings in different threads where often people with ME struggle through the cognitive impairment and exhaustion to pin down the specifics of a particular situation and gather together as much as possible.

This might offer some reassurance around potential benefits.

 

An auspicious beginning!

 

Thanks so much for doing this and for throwing the question out to everyone (which no doubt increases your workload)!

Something that seems like it’d be easy to implement and impactful is using a lot more imagery of people with severe and very severe ME in material produced by charities.

It frustrating to read symptoms that make ME sound like a bad cold and to me even worse when there’s a picture of someone looking mildly uncomfortable with their head in their hands as if they have a headache, and all the while millions of people worldwide can barely sit up or even eat.

I feel it would help a lot with public, medical and governmental attitudes towards pwME because a picture instantly connects and you can’t unsee a picture of someone so ill. It’s why it’s so hard when you see other charity appeals showing pictures of starving kids. It just seems like an obvious thing to do and yet there are rarely any pictures shown like that – we need people to understand what this illness is like and nothing can do that more instantaneously.

I saw this post by Janet Dafoe that gives permission for anyone to use the photo below of Whitney. And I’m sure if charities appealed for pictures they could build up a good bank of them for free and can avoid paying for stock imagery, which I don’t think connects with people very much at all anywaybecause it’s so often obviously staged.

https://x.com/JanetDafoe/status/1821647566364393915

 

I really don’t think charities should show pictures of starving children. Especially since the children shown are usually of non European heritage and the charity and intended supporters often are European. So it’s racist non-consensual image sharing.


But if adults with severe ME consent to having their own images used for charity purposes that’s fine. I agree that the severe experience ought to take centre stage.

Maybe some non photographic images also. Some graphics around severe illness.

 

Yes, and asked well worded questions that can’t be vaguely fobbed off, including at open meetings, and well worded FOIs.

 

I don’t have anything to add other than what has been said.
My view as said elsewhere is that there is “room for everyone” I think #thereforMe does something different than the MEA and AfME and they are also different. It’s no bad thing to have a few different but collegiate organisations. And it’s the same with S4ME, I think it’s an important “voice” but not the only one. I’d like it if S4 was one Avenue which AfME listened to.

 

I thunk it was the MEA did some work on this a while back, remember commenting on threads/images, I'm sure it was here, bt i dont have energy to find them. Stock images were sent to media i think.

As always there was considerable difference of opinion on what good images were, but it was a useful discussion IIRC. I think there were some great images taken by a campaign from German patient org? or possibly one of the Scandinavian countries, i cant remember. Come to think of it i do wonder what happened to all that?

 

Agreed.

the part that was powerful if I'm remembering the correct one from the MEAction survey was the open comments. Which could be filtered by clinic. I don't think it is that unmanageable for most (healthy and even a very much more motivated pwme who is in a better position) to read through these, and they are more accessible to scan as they are written in people's own language, than sometime reading summarised info from coding or interpretations from statistics.

I also think that if we are sending it to people who make funding decisions then we need to remember, as the bps very much do, that the questions will prompt an idea/reminder of what they should be using as a tick list when developing said service. I also think that we should be well within our rights to have our own measurement scale of what people are offering, as you say vs the 2021 Nice Guideline list - and this seems fair (then combine it with open comments to see if it's BS in content of these titles and they 'get it')

I agree that it might be useful to put some straightforward questions asking if they do the following as benchmarks down of what clinics should be offering if it is being sent to the ICB (could be yes no, or some sort of scale to tick):

services that are accessible (and useful/worth the energy and specific to needs) to those who are severe/very severe, moderate, mild ME/CFS (are they being rigorous in that); a diagnostic process that properly understands PEM and not some BACME version of it; having a medical member of staff who isn't either psych or physio, proper diagnostics for any other conditions (I feel we should be past the days of assuming these need to be exclusions, as comorbidities are possible and woohoo if it turns out something is fixed by iron tablets or whatnot) and action to initiate treatment, or request investigation of other conditions that might likely not be helping given it all draws on same energy (given the old guideline acted as a barrier, and the MUS stuff also did, to people getting investigated for anything as it labelled them hypochondriacs);

benefits/work support with forms; support with adjustments and social care applications, annual monitoring of physical condition and function ie their 'health' in a medical sense only for the purpose of the individual's needs and objectively reporting into statistics on prevalence and progression (so include drop-outs and reasons eg if the appointments become inaccessible due to severity); letters from a biomedical staff member to GP etc to educate them on the condition and what it means to reduce misinformation; basic straightforward leaflets about energy limitations and conservation, impact of orthostatic and stimulus issues (not sure on the intolerance word), PEM and the potential for deterioration if thresholds continually pushed (not much more needed there is there?);

as well as long-term commitment to patients with annual checks that are medical and objective ie as you'd get for another biomedical condition (is this eg 10yr outcome reporting?); a sensible pathway that allows for 'emergency appointments' or more 'intense support' when someone is at a moment of truth or potentially changing severity to allow intervention before that becomes permanent through eg looking at swift additional support/extra adjustments to care and checks there isn't another condition at play etc; liaison into the hospital to ensure safety of incoming patients/reduction in inappropriate psychologising, 'dunnos', FII etc (if in remit)

and...removal of all old (and new) website information suggesting anything regarding increases in activity or CBT unless someone has a comorbid requirement and removal of embedded old CBT or ideas that have been invented without evidence like 'dysfunction' or other pseudo ideas. ...In the name of mental health and avoiding causing situational problems by inadvertent misinformation that could disrupt relationships etc.

and ask them to state the referral criteria and copies of any letters/website info relating to that which they are sending out to eg GPs, in order that we can see whether it is an ME/CFS clinic, or one taking funding but operating the 'its OK we still offer harmful treatments because we only treat CFS/ME' so that we can see if they are making all efforts to exclude or include PEM .... ie delivering GET/CBT without asking the question at any point, so to people who have ME/CFS. That one could be better worded.

I'd also be intrigued to ask how many/what % of patients end up being given a pyschiatric diagnosis by the clinic.
And what % are confirmed to have PEM , and what % of those who they treat with their clinic are those who have said confirmed PEM-confirmed ME/CFS

That sounds about enough to start sending out gold, silver and bronze certificates if anyone ticks enough and their materials don't have anything misleading in them etc

PS one day I'd add in logging of additional diagnoses (on assumption of that lifetime monitoring) against a database of those with or who have had the condition in order to allow us to keep on top of common differential diagnoses, comorbidities, misdiagnoses, conditions that seem to develop x years in etc.

In a way it is fine if they want to offer massages or acupuncture like they do for cancer patients who also have proper treatment programmes for their illness itself. Notice that there are no points for psych courses. But they need to not pretend it is treatment, because it isn't psychogenic or psychosomatic, and shouldn't be diverting funding from hiring a proper nurse/biomedical consultant who can offer actual medical care and input into furthering knowledge, properly. Then claiming they can't possibly do the basics. Or the illest.

I'd hope that if the issue is understanding ME/CFS for nurses then people like Caroline Kingdon might be OK to help with what the best way forward in that would be. If it were a CPD type course then that sort of thing could then be added to a biannual survey (given the cycle of jobs we see that sounds a fair amount of time for them to be thinking about whether or not to just rehire to that old post or do something different etc).

 

Thank you Jonathan for doing this and everyone who's contributing.

Only able to have a very cursory read so apologies for not quoting some of the suggestions I'm referring to.

I think some form of collaboration between S4ME and AfME would be an excellent outcome.

Some points that I thought could be first steps for achieving something together:

1. Consult with S4ME members already before / during conceiving a survey on how NHS health care practicioners comply with the new NICE guidline

Some quick thoughts on this:

a) Survey should go to all staff who are likely to encounter people with ME/CFS, also if only for comorbidities/ complications --

so primary care, specialist clinics, hospitals, hospices -- doctors, nurses, therapists and administrative staff (those who attach labels/ diagnoses to patients for billing)

b) should include all points of the NICE guideline with regard to monitoring etc, also include whether/ which disability assessment done, disability aids prescribed, referrals made, dealing with comorbidities/ complications like problems with feeding, home visits for the severe /very severe

c) what obstacles are there to comply with the guideline, including bureaucratic and financial hurdles (coding, billing -- will explain in another post)

d) which other reasons are there to not comply?

e) What education on ME/CFS did/ do they use? Why (not) helpful? What could be improved?

f) include some concrete suggestions, e.g. If it was possible to collaborate in a team with GP, specialist nurses, occupational therapist, dietician if necessary, palliative care nurses/ physicians, and a physician with an interest in ME/CFS, would you make use of that?
(edit: Team does not need to be at one place /center. Maybe explicitly include hospices)

2. Could Ilora Finlay (physician role ) and Caroline Kingdon (nurse role) be interested in setting up a very pragmatic model for 1 f), beginning with a model for the very severely affected pwME/CFS ? I see Finlay is a Professor in palliative medicine.

Will write more later if able to.

Many thanks also to Sonya for listening.

 

Adding to post above on points 1 f) & 2.:

Maybe in a second step this model could include doing some basic research, too.

 

From another thread:

Maybe would be good to have such a survey filled in by pwME/ carers in addition, to corroborate/ contrast with the results of the survey addressed to HCP?

 

On their being a more formal relationship between S4ME and AFME it might be worth asking if a PPI relationship could be established? It is normal for this to happen with research, but if a charity is producing literature/resources for the public some sort of PPI should ideally happen. (AFME might be doing this already, Im not sure). But the quality of Patient interaction matters so sourcing them from S4ME would be good.

On the point of S4ME being consulted &/or being asked to participate on other projects. It might be worth formalising the group into an organisation structure legally (to give it more clout). I'm not sure if this already exists. But there are several options that wouldn't involve the intensity of a charity (altough that might be possible). There's a CCI & or social enterprise - or just a non profit, Ltd company. Yet Im fairly new here and this might have already have been discussed thought of.