UK Parliament: ME/CFS Announcements: Statement by Health Secretary Sajid Javid, 12 May 2022

To what extent are BACME involved in the new ME project?

 

I don't disagree with that - I have voiced strong criticism of them previously.

And I'm not arguing for or against anonymity, just saying that it is understandable.

 

Right, I hear you Andy.

I do think we need to know who is representing us. Looks like some kind of (online) system is needed so patient reps do not become overloaded with questions/communications from patients who are, at this stage, deeply concerned about how they are represented. Some form of online question/feedback system .... that can be responded to by reps when they can do that - not necessarily right at the moment patients are asking the questions, .... um, just thinking aloud there and trying to see a way

 

I think it’s understandable but probably not desirable. History suggests things work best without secrecy. If patients want to represent other patients then I think we should know who they are and what they are saying. I know that is difficult or impossible for some but if patients want to remain anonymously I think they should ask others to represent them.

 

If they are anonymous then they are not representing patients, they are representing themselves.

 

Sorry, I don't understand that argument. How does anonymity stop someone from being able to represent a community? And how does knowing the name of a patient representative ensure that they are able to represent a community?

 

Personally, I would only apply to be a PAG member if it were possible to remain anonymous. There are plenty of reasons why people may want to remain anonymous. However, I can see both sides. It could be argued that being identifiable is a necessary part of the job and one of the requirements of the role.

It seems that the current PAG members didn't sign up to be publicly identifiable and so it would be problematic to name them at this point. According to twitter there will be a recruitment round later this year so perhaps the option to remain anonymous could be removed then. Or maybe there needs to be an allocated spokesperson for the group who can keep other patients informed via social media?

 

It depends who that patient rep is and which community they represent. I know lots of Patient Reps who have not represented the community I am part of and have therefore been problematic to me and my group/or groups I support.
LocalME was set up due to the very problem of so called 'patient reps' from Groups who's stance did not work towards our common goal.
Same applied to some of the charities and their paid officers and reps who messed up big time in early 2000-2007....

 

If they are anonymous who decides they are suitable to represent patients?
I can understand an individual wanting to be anonymous for whatever reason but that is of no importance to the patient community. We need to know who is representing us and what they are saying/doing.
Should MP's be given anonymity if they felt it made their jobs easier? They have far greater reasons to be anonymous than patient representatives.
No patient representative should ever be anonymous, it's just common sense, not difficult to understand at all. It's a very basic protection against corruption - openess. They HAVE to be answerable to the community they claim they represent. If anonymous they are only answerable to themselves.

 

How does it depend? If you know them, then that shows that knowing who they are does not necessarily ensure that they will represent the community in the way that you desired. And how does it depend on the communty?

The people who appoint them to their role.

Different circumstance to the one we are discussing. MPs are elected by voters to their position, patient representatives are typically selected by people involved in whatever project the representative will be involved in.

And to me it is common sense that anonymity simply does not mean that a patient representative is unable to represent their community will or will be involved in corruption of any sort.

To spell out my own position clearly, it would be my preference for all patient representatives to feel that they are able to do so openly and in their own name - transparency is to be prefered - but I believe there are times when anonymity is understandable. For example, it's why all members here are able to take part using a pseudonym should they wish.

 

I feel uncomfortable not knowing who the patient members are and what is their remit. Is their remit to represent themselves as patients or to represent the patient community? They are different.

If they represent the patient community, there needs to be a way for the community to interact with them. If they represent themselves, - I am struggling here- how do we know that our individual views will be heard ?

 

And who are they? Are they anonymous as well? Non patients who decide who they think is suitable to represent patients. That is the exact opposite of representation.

 

Well that obviously depends, doesn't it. In the specific example we are discussing,

" for assessment by the PAG and three CMRC Board members:

• Prof Chris Ponting (CMRC Deputy Chair)
• Dr Charles Shepherd (The ME Association)
• The Countess of Mar (Forward ME)"

https://meassociation.org.uk/2018/1...-cmrc-patient-advisory-group-16-october-2018/

 

Well I now have absolutely zero confidence in the 'patient' representatives.
This is an organisation that appointed Esther Crawley as their scientific adviser.

 

Yes..... but representing yourself.
I would hate anonymous people being able to post on here using my name/account.