BBC Radio 4: The Life Scientific with Simon Wessely, 14th Feb 2017

trishrhymes

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A health warning is still pretty neutral & not enough.
I was trying to be polite...

I agree we need the patient organisations to take sides on our behalf when things like this occur.

On the whole I think the MEA does that pretty well. They are clear in criticising the BPS, CBT/GET approach and supporting and funding good biomedical research. And @charles shepherd does a lot of good work on our behalf in the APPG and trying to get the NICE guidelines changed etc.

I just wish they would make it clear where they stand whenever they post anything controversial on their website, so those not 'in the know' are not misled. I spent many years with the MEA website as my only source if info about ME, and had no idea just what a disaster was unfolding around me and the perpetrators of it. I hadn't heard of Simon Wessely and if I'd listened to that broadcast, I would have been upset by his attitude, and more than a little confused.

I'm a member of the MEA, so I guess I should write to them about this, rather than whingeing in here.
 

Cinders66

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I was trying to be polite...

I agree we need the patient organisations to take sides on our behalf when things like this occur.

On the whole I think the MEA does that pretty well. They are clear in criticising the BPS, CBT/GET approach and supporting and funding good biomedical research. And @charles shepherd does a lot of good work on our behalf in the APPG and trying to get the NICE guidelines changed etc.

I just wish they would make it clear where they stand whenever they post anything controversial on their website, so those not 'in the know' are not misled. I spent many years with the MEA website as my only source if info about ME, and had no idea just what a disaster was unfolding around me and the perpetrators of it. I hadn't heard of Simon Wessely and if I'd listened to that broadcast, I would have been upset by his attitude, and more than a little confused.

I'm a member of the MEA, so I guess I should write to them about this, rather than whingeing in here.
Fair enough. I'm not a member of MEA because of lack of assertive representation, especially for the severe who had a completely naf APPG on that area. I'm just saying what I need from a major patient charity which is advocacy, campaigning etc , unfortunately it doesn't exist. Then we have AFME who actually seem to be in collusion with the "other side".

The MEA make their position clear e.g. Their "call to scrap CBT/GET as first line treatmemt " but it's a call into the wind not a campaign, or a lobby which is why I think they are ineffectual. Citing their position of opposition to CBT/GET isn't the same as publically standing up to Wessely and Crawley and FITNET for example. Writing that they think severe ME services aren't good enough in a booklet isn't the same as doing anything about it.
 
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trishrhymes

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Hi @Cinders66, I agree we need strong advocacy. Maybe one organisation can't do everything. I think the MEA is, on the whole good at what it does, which is provide information and support for patients, and quiet advocacy behind the scenes. It was not set up to be a campaigning organisation.

I would love there to be an organisation focused on more public and outspoken advocacy, but that requires people with the right sort of advocacy skills to come forward and offer their services, a difficult ask when we are all so ill. Individuals do their best but we can't expect, for example, @charles shepherd to turn into a different sort of person. He does his best. We need someone else, or a lot more someone elses to add to his efforts by being more outspoken.

I don't want to take this thread off course too far.

Maybe we need to come back to thinking about what we can do about the BBC and the Simon Wessely program. Maybe I'll have a go at writing a letter, both to the BBC and to the MEA asking whether they can write to the BBC too.

When the Daily Telegraph published nonsense about PACE on their front page 18 months ago, Charles wrote an excellent piece on behalf of the MEA in rebuttal. Unfortunately it only ended up lost in the morass of the on-line version, not in the print version of the paper, but at least he tried.
 
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user9876

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Maybe we need to come back to thinking about what we can do about the BBC and the Simon Wessely program. Maybe I'll have a go at writing a letter, both to the BBC and to the MEA asking whether they can write to the BBC too.
I think there is a general question about the BBC and its unbalanced coverage of ME and support of PACE/Crawley etc. The countess of Mar wrote a complaint recently (I think about the Crawley coverage) but it was ignored. They seem to be one of the media outlets that take SMC output and fail to question it.
 

RogerBlack

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Not speaking up isnt being even handed its not being prepared to challenge the establishment screwing us over and its failing patient
It's a hideous choice.
Either you risk marginalisation and burning whatever social capital you have fighting 'mental health is important' (and of course it is) and trying to explain you're not against mental health or CBT, but ...
Or not explaining to patients the problems.
 

Cinders66

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Hi @Cinders66, I agree we need strong advocacy. Maybe one organisation can't do everything. I think the MEA is, on the whole good at what it does, which is provide information and support for patients, and quiet advocacy behind the scenes. It was not set up to be a campaigning organisation.

I would love there to be an organisation focused on more public and outspoken advocacy, but that requires people with the right sort of advocacy skills to come forward and offer their services, a difficult ask when we are all so ill. Individuals do their best but we can't expect, for example, @charles shepherd to turn into a different sort of person. He does his best. We need someone else, or a lot more someone elses to add to his efforts by being more outspoken.

I don't want to take this thread off course too far.

Maybe we need to come back to thinking about what we can do about the BBC and the Simon Wessely program. Maybe I'll have a go at writing a letter, both to the BBC and to the MEA asking whether they can write to the BBC too.

When the Daily Telegraph published nonsense about PACE on their front page 18 months ago, Charles wrote an excellent piece on behalf of the MEA in rebuttal. Unfortunately it only ended up lost in the morass of the on-line version, not in the print version of the paper, but at least he tried.

But don't corresponding Parkinson's or MS charity's do everything? I'm on Parkinson charity email list and they regularly do letter writing campaigns as does the MS society I think. People could be recruited for such roles within the MEA, I've never seen any effort to recruit, either as a paid role or voluntary. Many people are mild - moderate and probably could do some volunteering if the charities recruited. A letter from the charities should have been proposed by themselves so that people don't feel the here we go again wave of hopelessness again.
 

Jan

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But don't corresponding Parkinson's or MS charity's do everything? I'm on Parkinson charity email list and they regularly do letter writing campaigns as does the MS society I think. People could be recruited for such roles within the MEA, I've never seen any effort to recruit, either as a paid role or voluntary. Many people are mild - moderate and probably could do some volunteering if the charities recruited. A letter from the charities should have been proposed by themselves so that people don't feel the here we go again wave of hopelessness again.
I completely agree, I'm so fed up with being upset and feeling that nobody speak up for us, or a limp response weeks later. Nothing has improved over the 26 years I've been ill, in fact I was treated with a great deal more respect by doctors back then.

We need a body who speaks up for us in response to situations such as this, but also one that is proactive, why wasn't the Rituxamib trial in the press or on national tv? As far as I know it was only on the local news for that area. Surely this is at least a big a deal as the much spouted fitnet? If they feel unable to, then why not employ a press agent or whatever they are called? Most of us would be more than willing to help fund it.