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

I think the reason ME/CFS patients are now making some progress in their advocacy and activism is almost entirely due to the advent of the Internet. This was the key tool that gave a voice to sick housebound/bedbound patients. It was the Internet that allowed us to fight back against the highly prejudiced views that Simon Wessely and his mates promoted, that ME/CFS was just an "all in the mind" condition. Had there been no Internet, I am almost sure that we would still be in the same dire situation as we were before the Internet arrived.

Of course you are right that posting vitriolic words online is not the ideal approach. But ME/CFS patients have got to make waves and make a noise somehow. Vitriol gets noticed; whereas if patients just post up polite words, the effect will be much weaker. So I would say that vitriolic words are a necessary evil. Unless you can come up with a more effective means of grabbing attention.

Talking science does not work, because although having good science on your side is vital, only a small percentage of the general public have the time and the ability to understand the science. Whereas everyone immediately understands acerbic or spiky words.

 

Yes, that's an important distinction to make, between the (slightly wacko) diehard believers of the "all in the mind" somatoform/psychosomatic view of ME/CFS and its treatment with CBT/GET — who will never change their spots; and ordinary caring down-to-Earth medical professionals who only follow CBT/GET lines because they have been instructed to do so, and perhaps because flawed and dishonest studies like PACE erroneously suggest CBT/GET is effective.

These sensible down-to-Earth medical professionals will listen to reason and to science; but unfortunately with ME/CFS, the lunatics have taken over the asylum. It's this small group of slightly wacko psychs who set much of the agenda. So as part of a multi-pronged approach to rectifying the situation, the lunatics need to be taken away from their positions of power.

 

Yes, I think we all agree there. However, we want to keep on-side the GPs and others who have simply followed the guidelines. If GET & CBT could be dropped from NICE then everything would get easier.

We are not there yet.

 

Maybe you're on the wrong forum?

 

I don't understand your comment. I am saying that the the dry technicalities of science are not the best medium for reaching the hearts and minds of the masses.

 

That would be a great achievement, and would hopefully prevent the harm that GET may cause when it is over-zealously applied to sick children.

But it does not address the issue that ME/CFS patients should not be treated by slightly wacko shrinks who have this crazy idea that it is the patient's own thoughts which makes him ill. They are never going to treat patients properly if they are always superimposing their crazy "all in the mind" worldview over the patient's' symptoms.

 

For sure, scientific and political persuasion are vastly different. Science is not received well by many.

 

Yes, I understand the hesitation. I have been to sites that 'rate' Dr's for eg. And in my n=1 case I have a GP who no doubt is caring and good at his job when it comes to 'regular' health issues. He goes the distance. But he is a horrible Dr for me unwilling/unable to take the time or to listen. He's in charge and I am presenting him with medical issues that are not 'sanctioned' in the medical community. If I were to rate him it would skew others view of him in a way that is not reasonable if they only want regular care. We all can get frustrated but it needs some maturity and/or learning to realise that venting that frustration in ways like this is of no help.

Having said that I do agree with others that one can be angry and make a noise and be effective. It's all in the preparation. Thinking it through as a strategy, weighing the consequences. But this is not one of those times.

And we here mostly have that info. So really it would only be useful if there was a large influx of new people looking for this kind of information (if the info was formally held here).

 

I find the idea of this thread deeply troubling. I would want no part in it and would hope s4me would have no involvement. I would have to reconsider my membership here if it did.

 

The focus here is on science but advocacy extends beyond that. And I like to think that advocacy is definitely part of the site too.

I agree that as human beings while it would be great if the facts were always the deciding factor in others views, reason only gets us so far. There are those who would respond for eg to the social justice aspects of how we've been treated. And those people may value the science but have less of a detailed grasp or be moved by it to do anything.

Critiquing the science has now effectively demolished PACE. But it lingers on. This is a narrative issue of people's beliefs as propagated in the media.

 

Can you articulate some of your misgivings of the discussion Diluted-biscuit?

 

I think advocacy has many strands. Personally I think the stroppy/passive aggressive/exaggerated positioning approach (e.g. MEactions living death teeshirt ) or the name and shame/militant style of campaigning/ trying to stir people up ...this does nothing for me. I would prefer we keep doing what we are doing and chip away at the poor science, making peaceful protest, being the reasonable and logical party whilst raising awareness, giving guidance and support to new sufferers etc.

This recent surge in aggressive, unreasonable advocacy seems to be embracing the deployment of fake news (infectious M.E. is the true me, CFS isn’t me, mild me sufferers recover with GET, there are treatments available if doctors would prescribe them etc.). This is just poorly thought out pseudoscience and over exaggerated opinions mostly and has no scientific proof or basis a lot of the time ...it just makes us look stupid and I cringe when people quote bad science in the same breath as criticising PACE....I just think loony fringe I’m afraid. I’m pretty sure most people without ME would think the same.

It’s totally counterproductive and so easy for the BPS lot/establishment to pull apart and use this sort of ‘advocacy” to their advantage.

I get people are angry and frustrated and want to affect change quickly (that’s how I feel anyway) but I really hope people keep their heads and don’t screw us over with poorly thought out activities.

If it must happen I think other forum sites probably are best for that sort of activity ...I think I left a place a bit like that recently...can’t remember it’s name now but it had a lot of coffee enemas, talk about radiation from telephone masts and thought that a study on 12 people with fatigue was a good basis for trying a load of experimental drug and supplement “stacks”.

I hope this place doesn’t morph into that. It’s not why we set the site up after all.

 

I don’t think anyone should be ‘named and shamed’ whatever they have done, it stirs up hate and achieves nothing. I believe it’s fundamentally wrong.

Secondly we already have a problem being seen by some as aggressive and towards doctors and researchers. A website doxxing and listing accusations (without proof in a lot of cases) against psychologists, etc is going to make things ten times worse.

Im appalled this is even being discussed frankly.

 

It seems to me what has been forgotten about in all this discussion is that in the UK, the NICE Guidelines on treatment are the rules to be followed by every NHS clinic, and any other NHS personnel. Why should the clinic leaders keep up with the bleeding edge of ME research when they know the guidelines will be reviewed regularly. And say you collect a lot of anonymous opinion that claims that the treatments on offer aren't the "right" ones, until we get the result of the guideline review it won't have any impact.

I can see some value if it could be limited to reasonable reporting of the actual treatments offered by the clinics, so that patients could make an informed choice, I.e. clinic A only offers PACE style GET and CBT but calls it pacing, while clinic B calls it GET but doesn't push the patient beyond their limit, but that, I'm sure, would be nigh on impossible to ensure.

At the end of the day, my opinion is that the guidelines being changed will be the trump card, anything else would be a waste of people's time and effort.

 

But do you think that a change in the NICE guidelines will cause an exodus of psychiatrists/psychologists from the front lines of ME/CFS treatment, and in particular from pediatric treatment?

Before Wessely came along in the 1980s, ME/CFS patients were seen not by psychiatric professionals, but by doctors and researchers versed in biomedical science. Although no treatment was available, at least ME/CFS was being dealt with by the right professionals. It's completely inappropriate that shrinks should form the medical front line for ME/CFS, especially this wacko subset of psychiatrists/psychologists who believe that ME/CFS is an "all in the mind" condition caused by the patient's aberrant illness-maintaining beliefs.

Are these shrinks really just going to shut up shop and depart from ME/CFS if NICE guidelines do change? I don't think it is going to be that easy.

I would like to see not only ME/CFS research being conducted by biomedically-inclined scientists, but I would also like to see the clinical side being administered by biomedical doctors, not psychiatric professionals. Ultimately we need to get the shrinks out of ME/CFS entirely (except in cases where patients may have significant comorbid mental health symptoms, which does occur; but even then the psychiatrists should only be called in to deal with those specific mental health issues, not deal with the ME/CFS).

Thus I think the ME/CFS community should continue piling on the criticism as they have done so successfully in the past, so that these psychiatrists/psychologists are made to feel unwelcome.

And whilst this thread was focused on dealing with the specific issue of GET being over-zealously administered and coerced onto patients, I think that the larger objective is maintaining a continued harsh criticism of these psychs, so that they feel unwelcome, and hopefully eventually leave the field of ME/CFS. They should never have entered this field in the first place.

 

If the guidelines change so that GET and PACE-style CBT are removed as treatments? Yes. I don't think you are appreciating the difference between US and UK style health systems. Over here, the ME/CFS clinics aren't independent businesses, open to pressure being applied to them via a name-and-shame tactic, in the same way as there is little point applying pressure on the local branch manager of a bank whose CEO is making unethical decisions. In both cases the change must come from the top, and, given the staff shortages that we have in the NHS, if we achieve the change in the guidelines that we hope for then the vast majority of staff will be relocated elsewhere.

 

I think our advocacy efforts need to focus on: (off the top of my head)

• The farce that is the PACE study and fighting against ongoing BPS, such as FIT-NET.
• Getting the reality of the disease across ie how life-changing it is, even at the levels of "mild-moderate" and how devastating/disabling and life-threatening when "severe"
• Dissemination of advances in understanding of physiological and biochemical changes from scientific studies
• Awareness that in the USA, there is change and GET/CBT are no longer recommended by the Government Health Institutes

Part of our support network activity already includes providing info on current "CFS Clinics".

There are some clinics where the lead Therapists have worked out that PACE-style CBT and GET do not work and offer more supportive approaches.
They may still have to officially refer to them as CBT and activity management or similar, as otherwise the local CCGs will not fund them.

Providing this kind of info informally on the closed Face Book Parents site has worked well and can probably be done on here by Private Messaging or similar.

Hope that makes sense

 

Firstly, this is going to be a long post, so I apologise in advance. There are a number of points raised in this thread, and I'll try to offer my opinion on a few of them.

I'm not particularly interested in a name and shame website, though I appreciate others might want to do that. It could have some use, but I also see there are a number of pitfalls. I think it would be hard to maintain objectivity and avoid legal issues. I also think it's something that would need to be a last resort.

I do think there's a place for what we might call 'aggressive' activism, even if we usually think of it as unseemly. AIDS patients literally threw their bodies at people to show how ill they were. Lesbians abseiled into the House of Lords to protest section 28. The Suffragettes got into all kinds of trouble. It may not be everyone's style, but at times it worked. At times it was necessary. I would prefer direct action like this to passive-aggressive activism, and I appreciate that some people will never listen unless they're forced to.

There's some interesting nuance about Gandhi's nonviolent resistance, for example, that gets missed: http://www.markshep.com/peace/Myths.html. He wasn't against being aggressive and getting in people's faces. He didn't want to perpetrate violence against others, but accepted that it would be committed against him and his followers.

And MLK was involved in plenty of activism that provoked violence, like civil rights movements today:
https://www.washingtonpost.com/post...g-violence-the-civil-rights-movement-did-too/

So there is a place for aggressive activism, especially where people are trying to overturn imbedded, institutionalised problems. But usually these were desperate measures at a time when authorities weren't listening. (They were also pretty direct, whereas I think a website like the one suggested comes across as more passive-aggressive, and potentially more personal than it needs to be.)

That's in stark contrast to our situation now, where the CDC and NICE are at least making an effort to try and listen. It's important that we let them listen this time around, before we consider shouting at them again.

I think the state of ME treatment is in a different place to AIDS was, for example, in that while there's stigma and ignorance, that's the extreme situation, and mostly we suffer as a result of a lack of education rather than moral panic and widespread public prejudice.

The NICE guideline review could be a game-changer. Machinery is already in motion. MPs are on our side. Even The Daily Mail writes mostly positive articles about us, and the tone of other publications seems to be slowly shifting.

If the NICE review fails, and something still needs to be done (or if clinics don't follow NICE guidance), then I think that's the time to consider other, more confrontational actions. That would be the situation where we've given the system a chance to change and it's decided not to. That's the time to speak again, more clearly, and possibly more loudly.

But I think we risk sabotaging ourselves if, for instance, we run a website that could be libellous at a time when we're currently being listened to and we have a chance to change the record for good. If the NICE guidelines change to align with patients' opinions, that actually validates what we've been saying for decades, and also undermines claims that we've been harassing people or 'militant'. It shows we were right all along.

I think educating clinics will be more directly useful than finger-pointing, because many medical staff do want to help. We have to give NICE a chance to do right by us, and that should fix most problems with NHS treatment by itself. It also gives us protections if clinics flagrantly ignore or contravene NICE guidelines.

If all that still fails to deliver results, and BPSers still force their treatments upon us, and the Health Minister still fobs us off, and the media still hates us, well maybe then that's when we should consider occupying researchers' labs or lying down in protest outside the Houses of Parliament. But let's not cut off our nose to spite our face just yet.