What do people want me to ask Sonya Chowdhury on Friday

What patient group? If it's the Sussex and Kent ME/CFS society, for example, I would put no trust in the feedback, as the Sussex Society promotes yoga rather than support for the most sick, and it's long term Chair says he improved to nearly recovered with CBT/GET.

 

I think I agree.

Just interested in knowing what that means in detail.

E.g. would providing a private space on S4ME to discuss with whoever is interested on an individual project managed or funded by AfME fit in or would that be already out of the scope?

 

But she can help to put pressure on the authorities that are responsible for advancing research. DecodeME aside, those authorities have failed us for decades. They need to understand that it their problem to resolve.

I think Sonya gets this but I just want to be sure that she understands how important it is to many of us. Appropriate services and care are hugely important but my priorities have always been: research, research, research.

To put it bluntly, the quality of my life is not enough to want to go on without hope of improvement. Even with the best services and care in the world, after 32 years, my health is unlikely to improve significantly without advances in research.

I appreciate that appropriate services may be an important step towards advancing research (if they are run by the right people) but the goal needs to be understanding the pathophysiology to develop effective treatments.

This forum is great at what it does but I still think it would be useful to find a way to get more people with the right knowledge and experience to get together regularly to try to come up with new ideas about how to advance research. We don’t have enough emeritus professors of medicine who even understand what the problem is, let alone ones who are trying to figure out how to solve it.

 

They have known about this for ages; first alerted on PR. See
AFME - Association for Myalgic Encephalomyelitis website (not Action for ME) | Science for ME (s4me.info)

 

What could they do about this? Other than have a statement on their own website?

 

@Jonathan Edwards -- will you check this thread tomorrow morning / by what time does it make sense to post here?

 

Probably will not have time. I think I have probably sorted my agenda now thanks.

 

I gave the Sussex Patient Group as an example .....

Really, Can we have any trust in any Patient Group who are AFME members unless we know who they are and what their knowledge and experience is.

For goodness sake - can we, at this stage, trust our safety to an unknown 'patient group' when we know from harsh experience that the charities, BACME, etc (AFME's trusted affiliate Peter Gladwell for example) select patient representatives who are conveniently compliant.

.

.

 

@Lou B Lou I fully understand why you brought up the Sussex and Kent ME/CFS Society as I had an unpleasant experience with them around 4 years ago. I’ll post my personal experience below because it further highlights the problems you brought up but I understand if the comments are going off topic too much and are considered better moved or deleted by anyone moderating!


I called their service naïvely thinking they could help advise me because they were a charity and so wouldn’t be a proponent of the BPS model... unfortunately at that stage I was far less informed and had no idea of their troubling associations.

I spoke to someone who seemed quite high up in the organisation – I don’t know their name but they were an older well-spoken male that talked about their decades involved with the Society and that they’d also helped set up the NHS ME service in Kent. That comment started to ring alarm bells since my call was partly to ask whether the Kent service was still only offering GET and CBT, which was all that was open to me via my GP but I didn’t want because I was aware of the harm caused.

When I mentioned that lots of ME patients had talked about the harms GET could cause, I was essentially told that all ME patients on forums are a bit crazy and hysterical and that I should take no notice.

Further on in the conversation I mentioned that I hadn’t heard from the NHS ME service in a year but hadn’t chased them during that time for a number of significant reasons (GET and CBT being one major reason but I didn’t mention that or my other reasons). At this point he chuckled and told me ‘I think you could’ve done that by now’ implying that I was lazy and that was ridiculous. I was naturally thrown by his comments and attempted to explain why I hadn’t been in touch and that I wasn’t being lazy – something I shouldn’t have had to do. He then asked me point blank if I’d been to my doctor to get medication for depression. At that stage I said that I didn’t think that was a fair thing to say to me given he didn’t know my situation and I put the phone down.

I’m sure he thought I was ‘hysterical’ and ‘depressed’ and that my offence at his comments only served to confirm his views. It was a horrible experience because I didn’t expect to be confronted by that kind of attitude from an ME charity. Now I would fully expect that from that particular organisation but at the time it upset me a lot because I was much less informed and vulnerable.

I hate that this can happen to you when all you’re looking for is appropriate guidance and support. You shouldn’t need to be well-informed, experienced and ‘have your armour on’ before you ask a charity or organisation for help, but as we know that can be the reality.

 

I’m sorry you had to go through that. And glad you remembered the power you had to put the phone down and end the call.

 

@MrMagoo thank you so much that’s really kind of you. I guess one good thing to come from this illness is that the injustices force you to be stronger than you knew you could be, even if that’s just in little ways!

 

edited as I'd mulched in another post I'd half done when I hit reply

thanks for sharing. it just flags to me the clash of old with new.

this is an aside (not for meeting) but there is the awkward internal community bit that the changes to new guideline, CDC and Workwell type stuff coming through have/should present vs 'the before'.

echoing the royal college of psychiatrists FOI letter … it means more of a focus on the concept of PEM/PESE (and deterioration from cumulative overdoing, ie not 'spreading it out better' and 'being more moderate') being the paradigm for the illness.

I think as well there are probably some implicit things that need to be actually stated out loud within this that need to be therefore changed from before that become pretty fundamental to how things are set-up and structures/approaches for input:
- A medical based service would surely be focused on making sure it accommodates the most ill, and that almost needs to be prioritised. Yet history has been to conveniently focus on the least ill because it was supply-led, and all the rest of the issues with what it believed. But there was a whole landscape around that.

- This new paradigm therefore needs us to understand that 'cycle/journey/spectrum'.
Not 'just PEM/PESE', but the possibility of deterioration from cumulative going over threshold, so the moving up and down the spectrum with crashes/recovering from them and deterioration etc. But that in itself is a big difference for some (although I think what bps would like to sell of there being loads of people with 'CFS/ME' or what we might now term CF without PEM that will be left abandoned isn't true)

That some might only ever be mild, but most of us will at least have long crashes, many will have deteriorations or very long crashes that last years, over the space of decades there might be 'somewhat' significant fluctuation in level of disability but that also then the disability we experience also relates to the context/situation we are in (daily re: noise, thresholds being in our control, understanding, how easy life is like commutes, help, nice people around us).

- So whilst these things might affect and be relevant to all with the condition to know and have built-in, because different severities are like different stages of cancer, not like 'different cancers', and if you've only had it 2yrs currently the data you might be given on anything to do with what affects it and prognosis is based on bad data from most places. We need to be respecting the experience of people who have been there for anyone to understand what ME/CFS actually is as that full spectrum illness, and also to understand what difficulties crop-up and circumstances collide that we might need particular help or understanding for.

- But it is very hard and inaccessible and a big ask for someone more severe, who might also be contributing on what it is like to be moderate for many years in different situations and what circumstances led to that deterioration (so others can avoid it). And it might be less simply than their take-aways assume.

- then you get lots of people (I’d say who are early into their illness but I’ve watched others who’ve had it longer censor those of us who’ve had it longer from giving honest answers to newbies who ask those questions ‘in the name of’ not frightening them/hope - so it’s not that straightforward and that’s a point of misleading and withholding facts they asked for due to misguided ‘knows best pseudo psych presumption’) who don't want to hear anything that isn't positive because they can't cope or whatever throwing that into a group dynamic.

But with another hand you get things like structures that aren't lowest common denominator to the needs of the illest being included, because that would mean orthodox processes and presumptions of 'fairness' (if you think like everyone votes for themselves) or 'ear/listening to understand' (if you think its about understanding the bigger picture because we all might be in any situation) being represented by structures based on normal humans without an energy limiting condition that works on the spectrum this does.

this is quite a change. In voice needed. In information and mapping needed. But how does that old landscape, manage to map over into the new


but I don’t know how charities work on funding and who they have to please and what (perhaps not well-fitting) boxes they have to tick

And then you think about obligations and how those tickboxes work vs those they 'serve' and what that is. Who was (did they attract), and then who are they looking to be 'their constituency' and on what basis ie is it fighting for seats round the table because it is seen as time/resources are zero-sum

and then translate that to writing information documents, and then things that are more supportive things like eg care plans which might recommend one thing or another or suggest something will help that people then need to campaign for

And I start to see how complex this all is, and think back to how useful it is to understand the landscape - ie who does and doesn't do what, and if different organisations are doing the same thing but represent different constituencies, have different stakeholders and different loud voices etc.

I think @Sean has a strong point

edited to split for length

 

Well said

it’s that weaponising of mental health insinuations that’s got to be driven out as unacceptable behaviour in the community - I don’t care if it’s utter ignorance and/or delusion /wishful thinking (I’m a hero with the secret to life rather than lucky for having recovered from long covid after a year).

it’s not going to be an easy topic to do tactfully but there is a discussion to be had on this personality type (or whatever the right term for it is) or patient voice / power dynamic.

but also those who aren’t as ill being pulled up for suggesting ‘can do’ as if there is a motivational thing when if they’ve never had that severity they are no less bigoted for saying it than a healthy person is.

So no they don’t have permission to make false inferences about those more ill that they haven’t experienced and not be called out fir the stupidity of thinking you can.

but the ‘Pat on the head system’ has to be fair trained this into these people because it works for them. Every service looks for advocates in some way but there is a real insight to be had in whether they only seek the few they can make into poster boys or are operating a genuine two-way system more like having canaries in the coal mine (and if they are kept in touch with so they are doing ok then hopefully your service is working for all)

that’s why testimonials should tell you more about who it is saying it and never just be a couple of names saying whatever one-liners

 

We've got a lot of things that are based on ... is the word politics? where things end up being based on compromise and committees because even if there is somewhat 'one truth' (I know there never is) and for anything to work there just needs to be simplicity in some of the basic foundation documents and asks other things can layer in.

I have concerns about where it is information/advice making sure that the concept of 'qualified' starts holding more weight. And that processes absolutely start focusing on beginning with the info being put down and thinking what criteria make someone qualified to answer on that particular aspect (10yrs experience? 3yrs+ being severe? having had 2 different employers whilst diagnosed etc). And that will help in incorporating the nuance more accurately (if someone experience in mild, moderate and severe compare notes on eg showering, but at least one has experience of being different levels).

And then - and I need a more specific term than representation because I don't mean voting sense but perspective so that it is considered just like you'd have a limitations section on a piece of research. Like the poorest, minorities on top of ME/CFS, how do you reach someone who is poorly supported or has family accusing them of being x, y, z. But at least then we'd be reminding ourselves not to be those people

Some of these groups might be too ill (very severe) and/or in too difficult a situation to contribute, but I have concerns of the risk of paternalism here in assuming those people all want to be left alone not that they are desperate for someone to make the effort to read their input given by voicenote drip by drip or having to listen carefully as they get to the point. And really taking that on board as knowledge the didn't know but is right, because unbelieveable as it might seem they haven't been there.

And the truth is that processes that probably aren't that fair but tick the box for healthier people are really good at tilting the mic to those with the most spare energy, particularly if you end up with the cliche that causes consistent issues of there being work involved allowing the person who does x to have more voice. It also can remove nuance, and given different situations will crop up for different people with different needs and issues to tackle.. well things like asking for agreement can end up removing the wrong thing and being done on the wrong basis - if something needs to accommodate the needs of even the illest a vote from a range of severities at what the easiest way of doing y is isn't going to be that.

And a muddled-up add everything in isn't going to achieve it either.

Some people and orgs do seem to have managed to have developed some good processes, whether intuitive or textbook. PhysiosforME I think does well at it seems like hearing input with context. Just like we shouldn't listen to a testimony without knowing enough info about the person saying it to see who it is relevant to.


We then need allies who are unusually genuinely interested in the detail and nuance and properly representing getting that right. Ironically I suspect there are probably some from one-on-one advocacy services such as 25% and the one AfME did and maybe others who've spoken to and heard more in all these situations than most medical services.

It would probably be helpful that even if it is going to have to be somewhat adaptive and intuitive that what is learned is written down. Because I think this 'qualified' bit is a real issue for the community/sector. And when bps are trying to push the 'listen to those who recovered' they are absolutely pushing the button on that so we do need to actually have worked up the answer to that.

But whilst we still have that muddled up mixture of old and new, which includes a landscape needing to adapt its existing/old constituency and structure with the new stuff too then is that representing the straightforward new medical paradigm and the experiences of those caught up in the past issues to try and unpick the problems still there and harm caused and reasonable concerns.


@Sean I think you are correct in us being able to stay separate and articulate what we actually need to input, and not get dragged into others' ways of working that are dictated by other things.

I think others have noted accessibility-related points (and indeed better thinking on the question) on the ways of working here, but there is also timing of when s4me began and quite a clean focus/description of who we are.

There is that ongoing cliche of methodology/process vs end result and in some way both being important.

And the cliche of the likelihood of someone with the direct experience (of the different severities) and both being qualified and physically able to manage such a process themselves ever.

This is probably an important conundrum to sort and discuss, because we don't really need competing documents on 'the main facts' out there, or huge long compromise documents. And certain players are better placed for a certain document but then not so for others etc. But might need to be wary of where they are writing for their constituency and obligations vs what these are if it is taking on a task for the combined landscape etc.

And different parts of the landscape maybe better placed to contribute certain things as long as the potential other obligations or skew is well-understood and written down.

 

I'm so sorry you were put through that @RainbowCloud. The man you spoke with sounds like the Chair of the Sussex and Kent ME/CFS Society, Colin Barton. He was also deeply involved in setting up Sussex 'Fatigue Services', still is involved, and he is involved with BACME.

I had a near identical conversation with him circa 2 decades ago. I badly needed the name of a legal advocate, re medical malpractice and (separate) criminal offenses against me whilst severely sick.

The Sussex Chair's response was "Oh Dear, Oh Dear - are you taking any medication?"

When I told him that I'd been prescribed the SSRI Lustral (Sertraline) despite not having depression, but that I'd stopped it due to horrific side effects - The Sussex Chair replied

"Oh yes, lots of our member take that, they find that helps!"

Helps with what? I needed a legal advocate, not medicating. I left that Society in frustration and despair.




This is Sussex/Kent ME/CFS Society Chair Colin Barton, smearing ME patients in the international media, Reuters 2019, where he also says that 'talking therapies and graded exercise helped him recover to the point that he can lead an almost normal life.'


A REUTERS SPECIAL REPORT
' Online activists are silencing us, scientists say '

'Colin Barton, chairman of the Sussex and Kent CFS/ME Society – a patient group in southern England – said talking therapies and graded exercise helped him recover to the point that he can lead an almost normal life. He told Reuters that in his experience, patients who talk about having been helped by psychological or graded exercise therapies come in for abuse just like the researchers. They face accusations that they were never ill in the first place; that their condition was misdiagnosed; and that their recovery is therefore fake, he said. As a result, he said, many recovering or recovered CFS/ME patients feel forced to withdraw from the debate.'

https://www.reuters.com/investigates/special-report/science-socialmedia/

 

I also had a near identical phone conversation with AFME circa 2 decades ago - I badly needed the name of a legal advocate, re medical malpractice and (separate) criminal offenses against me whilst severely sick.


The response from AFME was:

"Oooh Dear! That must have been stressful! Do you do Relaxation???"

I needed a legal advocate, not pacifying by relaxation/meditation.

I think I replied to AFME something like "Yes my dear. I have been doing Relaxation/Meditation since 1972. But this is a medical malpractice and (separate) criminal offenses issue, a civil and human rights issue.

AFME basically wanted to teach me to 'Calm Down Dear'

@Sonia Chowdhury

.