United Kingdom: News from Forward-ME Group

[Jonathan Edwards]

Why is coming here being accountable to patients in the UK how many of the 400k PwME are members of this forum?

I think this is ostrich-speak Adrian. We live in a modern internet-based communication world. S4ME is the one place where anyone with ME/CFS can exchange views openly about UK service issues. It is also an excellent way of exchanging views with other countries. There are about 3000 members. Far more people than that look in here, I suspect around 50,000. I come across lots of people who know about the forum but are not members. Everyone involved in ForwardME knows about the forum. Several come here and read it.

I sometimes hear people saying that the S4ME community views are not representative but anyone interested in constructive debate is welcome to post hear. I don't get it.

If a resource like this exists I see no justification for living in an old world where nobody knew much about what was going on. Even then, having organisations negotiating on behalf of half a million people without anybody knowing who they are, what they think, or what competing interests they have is pretty strange. I actually think communication is moving forward quite well but in the past it has been extraordinarily difficult to have an open debate - other than here on S4ME.

 

[Jonathan Edwards]

To be honest I do think we came down a little hard on Karen Hargrave from ThereforME

I disagree. I raised how problematic it was to give publicity to the microclot team linked to an off-label related prescribing approach. This sort of poor quality science can and does cause major harm. Recently a physician I was talking to raised the problem of dealing with adverse events following anticoagulant therapy and apheresis - unprompted. I think Karen may have shifted her position but the initial call for services took no account of the fact that community based multidisciplinary rehab services are seriously counterproductive, especially if they displace the provision of a severe/very severe service, which is what Karen is really wanting. Badly thought out policy can do a huge amount of harm. And the problem is compounded by so many people with vested interests being only too happy to encourage advocacy that supports those interests.

Karen was dismissive of criticism, without being prepared to engage. That needs recognising.

 

[Trish]

I think all we are asking for is more openness from advocacy organisations, including ensuring they keep their public records up to date on their websites about their views, actions and processes, and including being prepared to listen to, and ideally participate in, discussion of their roles and activities, wherever that discussion happens.

It's up to them whether they choose to engage here. Many of our members are also involved at various levels in their local or national advocacy organisations, it's not a them and us situation. The more ForwardME members who choose to engage here, the more balanced our discussion is likely to be. It can be hard for those of us on the outside to know what is being done on our behalf, if they don't make anything public.

I don't know how patient/carer and clinician participants in the current government working parties were selected. I do think it would reassure pwME if they were to provide some way of opening channels for informing the wider community of their roles and the sort of things being proposed.
It all seems very unclear who and what is happening.

 

[Robert 1973]

I agree with Trish. Nobody has any obligation to post here. I also accept that it is reasonable for some patients and carers to be anonymous in a PAG.

From the very little I know, I suspect that the MERC PAG may have a good selection of members but that is beside the point. If any group is in involved with policy decisions I think it is important for there to be some transparency about the group’s constitution, including information about how members are selected and what their views are even if some are anonymous.

What if there was a PAG set up which was dominated by people who believe that have been cured by GET, LP or spinal surgery, which was then involved in talks on developing DHSC services? [Edit to add: it would be their right to set up or join a group but it would be our right to know what they were advocating.]


Regarding this forum. I think it does a huge amount of good work and it is a hugely useful resource, but with my limited capacity I often find it impossible to keep up because of the volume of content. I can therefore understand why some people may not find it to be the most efficient use of their resources to engage here.

I can also understand what Adrian is saying about the hostility. I’m not sure if he used that word but I agree with the sentiment. I like that fact that people are free to speak their minds, that science is meticulously scrutinised, woolly thinking is challenged, and that people can be open to changing their views following discussions. But there are also times when I feel that we could achieve more by being less confrontational.

Whether or not we chose to be anonymous, being behind a screen can be disinhibiting, as we probably all know from experience. If good people come on here with views that we do not share, I think it is incumbent upon us all to try to respond in ways which are most likely to lead to persuasion through polite discussion rather than backing them into a corner and/or making them run away. Sometimes that might mean using more diplomatic language to make the same point, sometimes it might mean saving a response as a draft until we’ve had a chance to cool off a bit, sometimes it might mean clicking like on a criticism we agree with instead of adding another post which may feel like a pile-on to the recipient, and sometimes it might mean sending a private message instead of posting publicly.

In 2020 I wrote to Margaret Mar – in a personal capacity, not as a representative of the forum – to ask if she had considered inviting representatives of S4ME to join ForwardME. I don’t think I’m breaking any confidences by sharing part of her reply:

“Forward-ME considered your suggestion at our meeting last week. Whilst we recognise much of the important work that Science for ME does, we are concerned that they do not function in the same way as do our existing members in that they can be very confrontational. It was decided that an invitation at this time would not be appropriate.”​

​

The Countess is not known for pulling her punches.

 

[V.R.T.]

I disagree. I raised how problematic it was to give publicity to the microclot team and also to Binita Kane's off-label related prescribing approach. This sort of poor quality science can and does cause major harm. Recently a physician I was talking to raised the problem of dealing with adverse events following anticoagulant therapy and apheresis - unprompted. I think Karen may have shifted her position but the initial call for services took no account of the fact that community based multidisciplinary rehab services are seriously counterproductive, especially if they displace the provision of a severe/very severe service, which is what Karen is really wanting. Badly thought out policy can do a huge amount of harm. And the problem is compounded by so many people with vested interests being only too happy to encourage advocacy that supports those interests.

Karen was dismissive of criticism, without being prepared to engage. That needs recognising.

It's not that the criticism she recieved was wrong so much as people came down on her like a ton of bricks as soon as she'd joined. And then she never returned. She strikes me as someone committed to the cause of getting progress for pwME, even if some of her views back then in terms of the stuff you mentioned (and possibly still now) were in my opinion misguided, and it's a shame she was scared off of interacting here.

But there are also times when I feel that we could achieve more by being less confrontational.

Agreed. I think there is a balance to strike between robust criticism and chewing people to shreds who disagree with us on advocacy strategies, or whose research has a small flaw in.

But at the same time, I think a lot of people (like Sarah Tyson) are not used to robust criticism and react poorly to it. And I don't think people like her should be given an easy ride when what they are proposing affects every pwME in the UK and we think it could cause harm.

I was on the other side of one of these pile ons when I proposed taking legal action against the psychobehavioural school if there is a research breakthrough, and while a lot of the arguments people made against it were cogent (and I probably agree with them now), the tone of some of the feedback and the overwhelming negativity was quite upsetting at the time.

 

[Jonathan Edwards]

“Forward-ME considered your suggestion at our meeting last week. Whilst we recognise much of the important work that Science for ME does, we are concerned that they do not function in the same way as do our existing members in that they can be very confrontational. It was decided that an invitation at this time would not be appropriate.”

That is interesting because around that time or a bit later I was invited to join ForwardME, and may main credential was the link to S4ME. I declined because there was a rule that you had to call ME/CFS "ME", and I think a rule that you were not supposed to express opinions independent of the consensus at FME. That seemed to me impossible to meet.

 

[V.R.T.]

“Forward-ME considered your suggestion at our meeting last week. Whilst we recognise much of the important work that Science for ME does, we are concerned that they do not function in the same way as do our existing members in that they can be very confrontational. It was decided that an invitation at this time would not be appropriate.”

This is frustrating though, because I don't think it's fair for pwME who spend their energy going through the science on here every day to be completely shut out just because we make people uncomfortable in our directness.

I don't think much progress has been made by playing nicely.

 

[V.R.T.]

I think a rule that you were not supposed to express opinions independent of the consensus at FME.

Thats troubling. I assume it is no longer in place?

 

[Jonathan Edwards]

It's not that the criticism she recieved was wrong so much as people came down on her like a ton of bricks as soon as she'd joined.

I am not sure what a ton of bricks is here. However, if you set up an advocacy site that encourages poor quality science associated with harmful and potentially lethal untested therapy as a result of your enthusiasm over-reachiing your knowledge of the field then I think something fairly clear cut needs to be said. I cannot see how a gentle expression of possible disagreement would make any impact in that situation. We are talking about matters of life and death for people with ME/CFS. This is real life, as you know. It is not a game about stories about an imaginary disease.

I appreciate that it is hard for people with ME/CSF and carers to appreciate just how awful almost all the advice from health professionals is for the disease and how bad the science is. Gentle murmurings are hardly likely to make a difference in this context. We still have physicians who recommend untested and dangerous therapies welcomed into the advocacy community.

I have been led to believe that the open letter to BACME, which might be considered 'confrontational' has been greatly welcomed by ME/CFS advocates engaging with the DHSC. I had a flurry of personal messages with thanks. I have persistently made the point that we cannot have a mild/moderate service without a severe service despite suggestions that this is asking too much. The DHSC have now agreed that this needs looking at again. Getting people to see reality seems to need confrontation I am afraid.

 

[Robert 1973]

That is interesting because around that time or a bit later I was invited to join ForwardME, and may main credential was the link to S4ME. I declined because there was a rule that you had to call ME/CFS "ME", and I think a rule that you were not supposed to express opinions independent of the consensus at FME. That seemed to me impossible to meet.

Maybe my diplomacy persuaded her to change her mind.

 

[V.R.T.]

I have been led to believe that the open letter to BACME, which might be considered 'confrontational' has been greatly welcomed by ME/CFS advocates engaging with the DHSC. I had a flurry of personal messages with thanks. I have persistently made the point that we cannot have a mild/moderate service without a severe service despite suggestions that this is asking too much. The DHSC have now agreed that this needs looking at again. Getting people to see reality seems to need confrontation I am afraid.

Totally agreed on the letter. I was one of the people thanking you in the thread!

 

[Trish]

I can also understand what Adrian is saying about the hostility. I’m not sure if he used that word but I agree with the sentiment. I like that fact that people are free to speak their minds, that science is meticulously scrutinised, woolly thinking is challenged, and that people can be open to changing their views following discussions. But there are also times when I feel that we could achieve more by being less confrontational.

Whether or not we chose to be anonymous, being behind a screen can be disinhibiting, as we probably all know from experience. If good people come on here with views that we do not share, I think it is incumbent upon us all to try to respond in ways which are most likely to lead to persuasion through polite discussion rather than backing them into a corner and/or making them run away. Sometimes that might mean using more diplomatic language to make the same point, sometimes it might mean saving a response as a draft until we’ve had a chance to cool off a bit, sometimes it might mean clicking like on a criticism we agree with instead of adding another post which may feel like a pile-on to the recipient, and sometimes it might mean sending a private message instead of posting publicly.

I agree in principle that we should try to be collaborative and diplomatic rather than confrontational, but that is largely up to individual members' style of communication. The moderation team do not tone police. That's not our job and would be impossible anyway as one person's confrontation is another person's clarity and honesty.

As to pile ons, I agree they can be daunting for the person whose work is being criticised, but that's the nature of social media discussion on all platforms and is generally much worse in less rules based spaces. Mods do our best to weed out insults and other rule breaches. We can't read everything instantly, especially now the forum is so busy, so we rely on members to report any posts that you think may be rule breaches.

I would strongly discourage your suggestion of using the forum's private messaging to criticise any member's views or actions. That can lead to more upset and angry reactions out of sight of mods which is unfair to the individual and can escalate. If someone does send you a forum private message you find confrontational or don't know how to deal with, you can report it to mods and we will take action.

Maybe you meant something different. I would certainly agree with sending well reasoned constructive criticisms via email to researchers or advocacy organisations. I seem to have made a habit lately of doing that, as have others here.

And I reserve the right to continue following David Tuller's good example of calling the PACE trial and its ilk a pile of crap. There are times when diplomatic language just doesn't seem enough.

 

[Robert 1973]

I have been led to believe that the open letter to BACME, which might be considered 'confrontational' has been greatly welcomed by ME/CFS advocates engaging with the DHSC. I had a flurry of personal messages with thanks. I have persistently made the point that we cannot have a mild/moderate service without a severe service despite suggestions that this is asking too much. The DHSC have now agreed that this needs looking at again. Getting people to see reality seems to need confrontation I am afraid.

The tone of the open letter and almost everything I can remember that you have published has been spot on. We should always be unequivocal in our criticism of research, policy, theories, proposals etc. Where I feel more care may sometimes be expedient is in the tone we use in discussions on here.

 

[bicentennial]

we cannot have a mild/moderate service without a severe service despite suggestions that this is asking too much. The DHSC have now agreed that this needs looking at again.

Made my day.

Maybe my diplomacy persuaded her to change her mind.

Thankyou

 

[Robert 1973]

Maybe you meant something different. I would certainly agree with sending well reasoned constructive criticisms via email to researchers or advocacy organisations. I seem to have made a habit lately of doing that, as have others here.

Yes, that’s exactly what I meant. Apologies if it wasn’t clear. Sometimes reaching out privately with polite, well-reasoned constructive criticism or advice can be more effective in my experience.

Nothing I have written is in any way intended as a criticism of the moderator or committee members of this site who do an amazing job – and keep this place a relative haven of sanity.

 

[bicentennial]

Made my day.

- assuming this is an all-in-one service under consideration, desegregated.

 

[Trish]

Yes, that’s exactly what I meant. Apologies if it wasn’t clear. Sometimes reaching out privately with polite, well-reasoned constructive criticism or advice can be more effective in my experience.

Nothing I have written is in any way intended as a criticism of the moderator or committee members of this site who do an amazing job – and keep this place a relative haven of sanity.

Sometimes I find I need the angry and anguished posts in a forum discussion to help spur me on to constructive action. All posts, whether diplomatic or not, are part of the process that leads into the production of the more diplomatic letters sent from the forum.

If we see each post as a personal contribution to a conversation, expressed in whatever way the individual can, including muddled, distressed, angry, inaccurate, and so on, the outcome of that conversation can be well reasoned argument and action.

So many of our members struggle even to create a post. I think it's too much to ask everyone to be always diplomatic or even particularly coherent.

 

[rvallee]

What advocates do in one country actually affects people with ME/CFS globally, and people from all around the world may be able to help them do their work better. That is a major thing that this forum offers, contact with people beyond fairly small bubbles of advocates in a single country, and networking with others with similar aims from around the world. It offers wider access to good ideas and reality checks.

And it must be said that this reality check is badly needed. The lack of substantial criticism made in decision-making circles has been appalling, and the NICE roundtable made it clear just how little meaningful criticism actually happens in secret behind closed doors. Given the tiniest bit of accountability in a setting and all of a sudden all this opposition drops, because it's never substantial. There was obvious confusion as to what the issues even were because our detractors didn't dare say them out loud, knew they had nothing to stand on.

I have not once seen anything produced by professionals, including at the highest level, that is even half as critical, in a positive, scientific sense, as what we do here, and in fact if there were even half as much as what we provide in those, almost all the mistakes would have been avoided. And given how impaired we are, it's extremely damning. We should not be the highest standard of scientific criticism on such an important issue, and yet we clearly are.

We are dealing with absurd things like GP conferences where they give obvious charlatans promoting alternative medicine businesses awards, among many other issues. And to me it's precisely this complete lack of meaningful criticism that is responsible. It's why S4ME is so difficult for the professionals who come in, they are so obviously not used to defend their position and present arguments that aren't accepted in advance. People who had to defend PhD theses fall apart at the slightest bit of substantial criticism, get emotionally defensive and usually give up. This is extremely odd.

This is what this forum is about. There is nothing else like it, while there are many communities where every bad idea will be met with 'LIKE!" and positive comments and letting anyone voice anything they want. More of that isn't needed. We are the only place where any actual substantial criticism seems to be happening, and that's priceless.

 

[rvallee]

This is frustrating though, because I don't think it's fair for pwME who spend their energy going through the science on here every day to be completely shut out just because we make people uncomfortable in our directness.

I don't think much progress has been made by playing nicely.

And given how disastrous things have remained for decades, I find it hard to reconcile that with not making people uncomfortable about it. Things are catastrophic, our lives are at stake and we are failed at every single stage, but everything should be polite and non-confrontational? That doesn't make sense to me, and might even explain why nothing has been done. If everyone is nice and congenial while our house is on fire and no one is doing anything about it, then the house will burn down completely. Again and again. My house. Your house. All our houses and the houses of future people who will suffer the same indignities.

In fact the only reason we aren't more confrontational, in terms of style, is because it always backfire because we have been completely maligned and un-peopled. But on substance it makes no sense when we are dealing with what is very likely the most incompetent failure in the history of all professions. In most other communities, people would actually show up with actual pitchforks and torches. As in literal display of "fix this or else" and the direct implication of what the 'or else' means. We can't do that. We have to be nice, but we can definitely be more critical about it than anyone else because no one is doing that.

Good grief I'm used to far more criticism from my days as a junior programmer every single day than what the entire health care systems go through here. It's a completely abnormal and dysfunctional context.

 

[Kitty]

As to pile ons, I agree they can be daunting for the person whose work is being criticised, but that's the nature of social media discussion on all platforms and is generally much worse in less rules based spaces.

I wonder if it might help to suggest that new (or new-ish) contributors who come here to present a piece of work avoid following the responses / conversation in real time?

Occasionally is can be quite intense, and might give the sense of a pile-on even when it isn't because people who feel particularly opposed happen to be online, and others who might be less opposed (or see different things in the content) aren't. So the OP doesn't see the balance and back-and-forth between members that often develops over a couple of days. Also, if they respond in real time, they receive a lot more questions.

If they posted their paper / article and left it there, they'd have a lot more to read on their return but it would contain multiple viewpoints. It might help give them the perspective to work out what the most important challenges and queries are, without having to face a barrage of real-time questions.

Experienced professionals ought to be old enough and ugly enough to take it on the chin, but young researchers and those with ME/CFS themselves might benefit from allowing the debate to play out before they respond.