United Kingdom: News from Forward-ME Group

[Adrian]

Or to not be accountable for their opinions..

If you want a wide range of discussion then it is helpful for people to be able to throw out ideas. And why should an individual be accountable for their opinions? Chatham house rules normally apply when discussions are happening not when decisions are formed and made.

Do you think people on this forum should be accountable for their opinions in which case should pseudonyms be removed. (and it was a big deal for me putting my name in a forum).

 

[Adrian]

I see that Forward-ME has a website and lists its member organisations.

One of the members is the Patient Advisory Group for the ME Research Collaborative.

It sounds as though this group has been influential in making policy affecting people with ME/CFS.

The link for the organisation goes through to an AfME page - here
There is no information about who is a member of the group or who represents them on Forward-ME. There is no information there about the selection process for getting onto the PAG. I have seen something suggesting that the MEA has run the selection process in the past, but they are not now an organisation I would trust to select good quality members.


Forward-ME says one of its values is

I think part of that transparency and accountability is making public who the representatives taking part in Forward-ME are.

The idea of a patient advisory group is that there is a collection of patients who can give their perspectives as patients to an organization - the idea is not to represent all patients. As I have said before and is the case here many patients want and need to be anonymous - there are concerns about comeback in terms of medical care, for those of us who are patents concerns are much greater and also people get concerned about benefits.

FME isn't a group that makes policy. Its a way for charities to co-ordinate.

 

[Jonathan Edwards]

Why would people come here to post just to get told they are wrong and get lots of criticism. If we want groups to post here we have to make it into a place where it is positive to post - including getting criticism that helps refine improve a message. Currently I worry its not.

I don't see it like that. The way I see it is that there is an awful lot at stake and we need to be honest with each other. I am not aware of anyone who has come here who has been treated unfairly. People have come here and exploded with abuse at the community and not returned, thank goodness. People have come here to advertise wares and been seen off, thank goodness. I really don't recognise that anyone has come here and been turned away without hearing them out.

 

[Jonathan Edwards]

Chatham house rules normally apply when discussions are happening not when decisions are formed and made.

So why was it (there is only one rule) applied to the NICE Round Table where there was a face off between political groups affecting half a million people's right to decent care?

This seems ingenuous to me, Adrian.

 

[Jonathan Edwards]

FME isn't a group that makes policy. Its a way for charities to co-ordinate.

If FME is not there to influence policy then the working groups are presumably a complete waste of time?

 

[Utsikt]

Why would people come here to post just to get told they are wrong and get lots of criticism. If we want groups to post here we have to make it into a place where it is positive to post - including getting criticism that helps refine improve a message. Currently I worry its not.

Do you have any suggestions for making it «positive to post» for people with rather questionable opinions?

I’m sure it can be quite uncomfortable to face a stream of questions and criticism, and emotions can run high (even though the mods do an excellent job at containing it), but how do you avoid that on a public forum where the stakes are so high?

If you want a wide range of discussion then it is helpful for people to be able to throw out ideas. And why should an individual be accountable for their opinions? Chatham house rules normally apply when discussions are happening not when decisions are formed and made.

Individuals that are involved in affecting or making polices on behalf of others should be accountable for their opinions. That’s a basic democratic principle.

Do you think people on this forum should be accountable for their opinions in which case should pseudonyms be removed. (and it was a big deal for me putting my name in a forum).

People should be able to chose whether to disclose their identities on a discussion web forum. I use my own name when attempting to influence policy directly.

We also need to appreciate how little time and energy people have.

If an advocate is unable to touch base with the people they represent from time to time, they should perhaps consider if they have enough capacity to fulfil their role effectively. I appreciate that periods can be extra busy and ME/CFS makes things unpredictable, but the norm can’t be no contact. How would you know which opinions you are supposed to represent if that’s the case?

 

[Adrian]

Do you have any suggestions for making it «positive to post» for people with rather questionable opinions?

Why do you assume people have questionable opinions? They may disagree with you, they may even not. But there are plenty of ways to positively engage with people in ways that lead to more influence.

Individuals that are involved in affecting or making polices on behalf of others should be accountable for their opinions. That’s a basic democratic principle.

Many people are involved in some ways that have an effect on policy and much is individuals giving individual opinions or people who are there because they volunteer. Do you want to cut the number of people involved in any campaign activity to just those who feel safe to put their name out in public? This is selecting who can take part and ruling many out. Policy is generally made by governments who are accountable.

If an advocate is unable to touch base with the people they represent from time to time, they should perhaps consider if they have enough capacity to fulfil their role effectively. I appreciate that periods can be extra busy and ME/CFS makes things unpredictable, but the norm can’t be no contact. How would you know which opinions you are supposed to represent if that’s the case?

Advocates don't represent this forum so why should they come here.

In many cases for patent advisory groups they are there to give their views and those are assumed to be their views not representative - hence the need to have a mixed set of people involved.

 

[Adrian]

I don't see it like that. The way I see it is that there is an awful lot at stake and we need to be honest with each other. I am not aware of anyone who has come here who has been treated unfairly. People have come here and exploded with abuse at the community and not returned, thank goodness. People have come here to advertise wares and been seen off, thank goodness. I really don't recognise that anyone has come here and been turned away without hearing them out.

Influence isn't gained by shouting at people because they aren't pure enough. Its gained by working with people, helping, encouraging etc - if you just shout they don't come back and form other groups.

 

[V.R.T.]

Why would people come here to post just to get told they are wrong and get lots of criticism

because that is what being accountable to the patient community means.

 

[Jonathan Edwards]

Influence isn't gained by shouting at people because they aren't pure enough. Its gained by working with people, helping, encouraging etc - if you just shout they don't come back and form other groups.

That seems a pretty odd thing to say. Is it an accusation? If so, on what basis? Who is shouting at people? I was under the impression that personally I had been working with a group of aptients for ten years now, writing documents in their support and doing my best to help and encourage. But that also involves calling people out when I think they are causing harm, which is happening all the time, sometimes through lack of consideration but much more often through lack of knowledge of the complexity of the subject they are dealing with - through no fault of their own. My impression is that we are still in the mess we are now because this has not been done long ago.

 

[Adrian]

because that is what being accountable to the patient community means.

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

 

[Hutan]

Influence isn't gained by shouting at people because they aren't pure enough. Its gained by working with people, helping, encouraging etc - if you just shout they don't come back and form other groups.

That's really not fair @Adrian. If we take the example of Sarah Tyson, many of us spent many hours trying to work with her in a constructive way. She splattered vitriol over the forum when we did not agree with her views. Even after that, many members continued to keep trying to work constructively with her projects to make them head in a better direction. The forum as a whole was not doing the shouting.

I can think of a number of other examples. Polite disagreement is not shouting, although perhaps it can feel like that to people expecting immediate gratitude and agreement.

 

[V.R.T.]

. I am not aware of anyone who has come here who has been treated unfairly.

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

 

[V.R.T.]

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

I don't know, but I am one of them, and I know many others here are too. I don't like the implication that my voice somehow doesn't count.

 

[Trish]

Why would people come here to post just to get told they are wrong and get lots of criticism. If we want groups to post here we have to make it into a place where it is positive to post - including getting criticism that helps refine improve a message. Currently I worry its not.

We list in our forum values:

We value four things especially:
· high quality scientific research, which will be necessary to produce effective treatments;
· open, critical discussion of claims and ideas;
· mutual support and respect;
· equality.

The mutual support and respect work both ways. Sometimes people come here to share ideas or projects and can't take any criticism and go off in a huff, others welcome it. I don't think we should stop criticising just because some people don't like it. I have observed multiple cases of positive outcomes from forum discussions that were probably hard to take at first for the person whose work has been criticised, but the outcome has been worth it.

I think we also need to recognise that S4ME is not a single entity, it's simply a moderated space provided for a lot of individuals to share their views on all sorts of ME/CFS related topics. We won't always agree with what others say or how they express it. It's surely understandable that with so many very sick people using the forum there will be mistakes, upsets and pile ons at times when something in particular stirs up a lot of strong feelings.

Maybe in the case of ForwardME this discussion will prompt them to update their reports of meetings and what they are involved in on their website, including listing the organisations represented in each meeting, what other bodies they are represented on, and how they can be contacted. That would be a positive outcome. I don't know whether anyone from ForwardME reads the forum.