United Kingdom: ME Association news

The problem is that even if the consultant heading up a CFS clinic understands the nature of ME, the only approach that can be funded by the NHS is GET and CBT as per the ****** NICE GDL. It was the same with Dr Bansal and the Sutton Clinic. Many PwME there did not even get to see Dr B, just a talk by the team to a group of us, then the option of physio, psychologist or nurse.
Seeing him privately enabled him greater flexibility with testing and potential treatments.

Dr Chaudhuri was at the same table as me at the Scoping table. He does understand the issues with GET/CBT, which is why he wanted to be involved with the GDL Committee. He was not appointed.
In common with other fatigue clinics about 40% had alternative diagnoses.
Someone who used to be in our ME group has found him very helpful with issues around reducing work hours etc.

 

Charles Shepherd replied to an email I sent, saying that they are taking allegations against Professor Findley seriously, discussing the allegations with him and the MEA is to release a statement tomorrow.

 

ME Association Trustee’s Statement re: the appointment of Professor Findley as Patron of the charity

"Following the appointment of Professor Findley as a new patron of the charity on 06 October, and while we have received a good number of messages supporting the decision from both charity members and non-members, there have been some notable objections and strong expressions of concern made primarily on social media. We are raising the concerns that have been expressed with Professor Findley, and will make a further statement once he has had an opportunity to respond.

• If anyone has further concerns in the meantime, then please email: contact@meassociation.org.uk

The ME Association Trustees"

https://meassociation.org.uk/2021/1...f-professor-findley-as-patron-of-the-charity/

 

"Made primarily on social media"; sounds derisive and strikes an inappropriate tone.

I am concerned that there is not enough focus on his record (as opposed to his conduct with patients). It would be great if Findley and/or the MEA repudiated the previous "treatments" and practices. It seems best to raise these issues in a letter, but I wonder if it's a waste of energy given how dismissive this statement sounds (at least to me).

Edit: just to clarify, the statement strikes me as not engaging with the substance of what has happened in terms of how people must be feeling, which is why I felt it was a bit off. Saying that they have had supportive messages as well in the context of the other messages is not a good way to respond given what this is about. I hope that makes sense. xx

 

Yes absolutely.
‘made primarily on social media’
contains implied criticism of the method of communication used by patients advocates & others.

Certainly a criticism of patients who did not write to MEA directly in addition to making their pain known publicly.

Possibly a criticism of all patients who’ve communicated pain publicly.

Evidenced by communications on this subject so far MEA unprepared for such a challenge.

Lastly they themselves have a social media presence. A space in which they are very active. At least when it suits their purpose.

So is this intended as a one way street in communication terms?

Or two way only where patient feed back is positive?

Or do the communication team or top level managers not understand the nature of the platform?

Do they consider social media trivial or distasteful?
Do they need to make this attitude formally known?
How do they respond to private correspondence?
How well do they utilise other channels for direct contact with patients who are already greatly disadvantaged in terms of communication?

Facebook and other host sites are highly problematic. May well have caused far more suffering than they have ever alleviated. It sounds as if MEA may have just alluded this.

I would be glad to know MEA were giving such an important pressing topic as harm caused via social media due and proper consideration.

For such seriousness to be evident MEA would need to examine their own reliance on this tool. To lead with clarity on this issue. Before reflecting publicly on others usage.

They might then have cause to reflect then on the extra difficulties for disabled people who are otherwise largely excluded from society by extremely difficult circumstances. Disabled people with ME who rely on social media as a tool to have any connection at all.

MEA would benefit from asking themselves why some have not been able or willing to restrict communication to MEAs own organisational channels.

“made primarily on social media”

Why not?

On social media others who are impacted or upset by MEA’s decisions will listen and provide support.

Will MEA listen to this distress and will they act upon what they hear?

This is unknown.

However past and present form would suggest not. This is all the experience patients and carers have to go on.

 

I know I sound like a stalker but if anyone is interested: the original post about becoming a patron has been deleted both from the MEA website and Facebook. This is what you can read in the comment section of today's FB post: ME Association limited who can comment on this post. (I'm a follower of their FB page and I couldn't comment.)

 

So they have shut down that avenue of communication on the topic? Great.

 

most people/members who aren't on social media probably haven't the faintest idea who Findley is, apart from what the MEA have told them (particularly as his clinic closed 10 years ago).

 

Deleted previous post as a bad job.

Basically I mean to say and I hope it makes sense -

The MEA reference to social media posts and asking for emails could be because this is actually a serious business they have to to take seriously. I haven’t read anything other than this thread, but understand that posts of concern and with experiences have been made on several social media platforms. I guess some posts were anonymous or semi anonymous due to the use of usernames, or not full names. To look into this properly I can see that the MEA would want to collate complaints by email for the trustees to consider. They may want to correspond with some people for more details. I don’t think there is necessarily any slight to patients in it, though I acknowledge that the tone in some of the communication has seemed a bit defensive. Emailing might well be difficult for some patients.

 

The way this is being handled — the “primarily on social media” line and the deletion of Facebook threads — I would describe as “shameful”.

“social media” is especially tone deaf… think about who else talks about the crazy patients harassing them on social media…

 

Those were my thoughts as well. The MEA really needs to sort out its attitude and communications. Comments about "social media" belong in a time capsule at best and are a throwback to a time when narratives about us could be controlled and shaped with no ability to reply.

I am disappointed that it is no longer possible to communicate with the MEA or - worse - with other people given the deletion and closed comments. I personally found it comforting to be able to see other people's experiences with Findley and to be able to interact with people; to see the reality that I wasn't the only one who had difficult experiences was upsetting but cathartic and helpful, ultimately. Seeing the support of the community was touching. It was healing to see that we could reach out to eachother and come to terms with everything. Deleting this/restricting access to it is wildly inappropriate.

 

Also it's a dumb response. They're gonna talk to Findley about the allegations... and then he'll say "no I didn't do those things", and then what?

 

https://twitter.com/user/status/1448710657235378176


https://twitter.com/user/status/1449042568075952135


https://twitter.com/user/status/1449043874651987977


https://twitter.com/user/status/1449088569079906306

 

"legal action could be taken against [...] the maker of the allegation"

"damaging to his personal and professional reputation"

What about any legal action that could be taken against Findley as the result of the allegations? If you are going to say this, why not say that as well? What about the damage done to patients? Why are all of the statements coming out of the MEA centering Findley in a context of allegations of mistreatment?

 

I was concerned that this was not getting enough attention. One does not need to "investigate" much as Findley's comments are available online. The most helpful thing he (or the MEA) could do for patients at this stage is to unequivocally and explicitly repudiate them at the very least.

 

Sorry I haven't read all the stuff on this thread; have the MEA anywhere said why they suddenly decided to appoint Findley as a patron now?

 

Not that I am aware of, and with the comments on Facebook having been deleted it's not possible to review these.

At one point, IMMS, Dr Shepherd had said (in defence of this decision?) that Findley had signed one of the joint letters. Possibly the invitation to join the list of Patrons flowed from that, but I don't know.