Name and shame list of institutions and psychiatrists/psychologists/pediatricians coercing exercise therapy on unwilling ME/CFS patients

[Diluted-biscuit]

Are you saying there is no room for any more awareness raising, and that we've reached the raising awareness saturation point? That's an odd argument.

No, you are putting words into my mouth, you are superimposing your own conceptions onto my idea. Where did I say I wanted to provoke animosity towards practitioners?

Just to remind you, let me quote my post from the start of this thread:

Don’t be ridiculous, my criticism of this idea and thread is the meathod of raising awareness, not raising awareness in general. I’m saying people are already challenging the science with success and that we need more of that.

Let me remind you of the thread title you chose for this thread, I don’t believe I’m superimposing anything.


*edited to add* I have nothing more to add so this is my last reply

 

[Hip]

Let me remind you of the thread title you chose for this thread, I don’t believe I’m superimposing anything.

The dictionary will tell you there is a difference between shame and animosity:

Shame = the distress arising from the consciousness of doing something wrong, dishonorable, improper or ridiculous.

Animosity = a strong feeling of dislike or hatred.

I know that we sometimes see animosity directed towards Wessely and Co on the ME/CFS forums; but don't assume that the idea I am toying with is intended to promote it.

But perhaps you have inadvertently highlighted why some people seem to be expressing strong opinions against this idea: perhaps people are construing "shaming" as an aggressive act, attacking someone. But I am using the normal dictionary definition of "shame", where the feeling of shame is something that an individual's own conscience actually produces.

We have Jane Colby of Tymes Trust in the UK talking publicly about dealing with at least 200 cases,

I am not familiar with her work, but I've just had a quick look at the Tymes Trust website, and I am sure she does a good job.

However, does Colby detail the offending hospitals and psychiatrists/psychologists/pediatricians? Does she quantify the extent of the problem, and detail in which areas or institutions it most occurs, which is the sort of information I was hoping to gather? I had a quick look, but could not find anything like that.

I think the difficulty with relying on people such as Dr Nigel Speight is that they have to tread very carefully, and may be pulled up by the GMC if they start criticizing other medical professionals. Dr Speight has already been pulled up by the GMC for trying to help a child damaged by GET.

There are likely other practicing doctors out there who know these pediatrician psychs are causing problems, but professional etiquette (and fear of the consequences) prevents them from speaking out.

 

[Trish]

I am not familiar with her work, but I've just had a quick look at the Tymes Trust website, and I am sure she does a good job.

I have to confess that I'm astonished that you are unaware of Jane Colby's work at Tymes Trust, given the topic of this thread. Perhaps you might like to listen to her ME Show interview (Episode 4) to learn more about what she has been doing for years to help children and their families when they are put in the very position you say you want us to expose and advocate about.

However, does Colby detail the offending hospitals and psychiatrists/psychologists/pediatricians? Does she quantify the extent of the problem, and detail in which areas or institutions it most occurs, which is the sort of information I was hoping to gather? I had a quick look, but could not find anything like that.

Of course a charity is not going to name specific doctors and hospitals who are causing problems for patients on their website. That doesn't mean they don't have records and work hard to change bad practice in those specific situations. Libel laws, and the need to protect the confidentiality of patients would preclude such public statements in relation to specific cases.

 

[Science For ME]

The S4ME Management Committee have considered the suggestions raised in this thread. We have decided that we cannot support the idea of a "naming and shaming" thread or subforum here on S4ME.

One of our major concerns is the risk of legal action against S4ME or its members. The forum itself could potentially be liable, if we were seen to be encouraging libellous comments. Nor do we think this approach to advocacy fits with the ethos of this forum.

However, S4ME does have threads where members can discuss their treatment experiences and examine the scientific basis of treatments used by doctors or clinics within forum rules.

 

[Keela Too]

I think also we want some of those folk who have been applying GET under the direction of their seniors, to feel that they can pause and take a review of their outcomes. There must be quite a few who are watching and listening to the debates around PACE and who will eventually feel they can speak out. We will need these people to help with the groundswell changes that I think will soon be inevitable.

 

[Graham]

There is a side to this debate which hasn't been mentioned – the nature of this forum. There are very many good things that should be done on behalf of people with ME, but none of us has the energy to be involved in all of them, or even some of them. This forum was set up with a very specific brief, to support a scientific approach to aspects of ME and research, and to enable folk to collaborate to produce good scientific contributions to the field, whether as articles, letters, membership of NICE, informing journalists etc.

That does remain its core purpose, although as in any human organization, it's decidedly fluffy around the edges. But it wasn't really set up as a patient-centered support system etc.

Producing lists of good or of bad ME centres could be invaluable to many patients, as could advice on settling insurance claims, claiming benefits etc. The question is whether this forum is the right place for that, or whether we need a new, patient-centered forum to focus on those issues.

Personally I already find the present forum has too many threads for me to follow. I know I can't do everything I want or feel I should do.

 

[Sasha]

There is a side to this debate which hasn't been mentioned – the nature of this forum. .... This forum was set up with a very specific brief, to support a scientific approach to aspects of ME and research, and to enable folk to collaborate to produce good scientific contributions to the field, whether as articles, letters, membership of NICE, informing journalists etc.

That does remain its core purpose, although as in any human organization, it's decidedly fluffy around the edges. But it wasn't really set up as a patient-centered support system etc.

Producing lists of good or of bad ME centres could be invaluable to many patients, as could advice on settling insurance claims, claiming benefits etc. The question is whether this forum is the right place for that, or whether we need a new, patient-centered forum to focus on those issues.

I think the forum was set up with goals a bit wider than the science. The core values are listed as follows:

Core Purpose and Values:

Science for ME is an independent, patient-led, international forum for people with ME/CFS and the carers, clinicians, scientists and advocates who support us.

Our goal is to provide a platform to discuss all aspects of this disease, with a special focus on science, support, and advocacy.

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.
​

 

[Trish]

That does remain its core purpose, although as in any human organization, it's decidedly fluffy around the edges. But it wasn't really set up as a patient-centered support system etc.

I agree that a key core purpose was to provide a forum where all the research about ME, good and bad, can be scrutinised, discussed, dissected, applauded or challenged - and groups can get together to write letters, articles etc in support of good science and challenging bad science.

But I would say our initial purpose also recognised the need for patients to have a safe place to share our griefs and joys, have a laugh when we can, and to support each other in the daily struggle to keep going in the face of very difficult symptoms and an often unsupportive environment. That safety is directly related to the scientific focus of the forum because it means we don't allow people to come on here and push unproven and possibly damaging therapies, 'cures' or protocols.

But I agree we cannot do everything. There are other ME organisations that may be better placed to serve other roles, especially ones involving providing up to date information to patients about treatments and services available locally, and organising advocacy actions.

 

[Graham]

Yes, I admit that I over-simplified! But the essential idea is that I don't think that this sort of patient support is a natural part of our focus. But my brain manages "simple" much more easily.

Of course we support each other, and I don't claim for one minute that the limerick thread is built on a scientific basis: nor do I think that we cannot dabble elsewhere, but things like a list of supportive GPs are more suited to the more general ME forums or Facebook groups. In fact the ME Chatroom Facebook group already has (or is trying to build) a list of supportive doctors.

 

[fossil]

I don't claim for one minute that the limerick thread is built on a scientific basis:

Uh oh. I'm worried you might have given the BPS crowd an idea for a new research project there, Graham. If they think a video game study has merit...are the healing powers of limericks next????

A psychologist who felt it was time
To prove limericks were truly sublime
Launched a study to show
That health woes would go
If patients just learned how to rhyme

 

[Hutan]

Posts related to @Samuel's suggestion that there are other ways to address poor medical treatment have been moved to a new thread as requested.