David Tuller - Trial By Error: A Post About Andrew Lloyd

[Alvin]

People that espouse these viewpoints should be drummed out of town, tarred and feathered, set up in stocks and pelted with tomatoes, and that's frankly the least of what they deserve.

I hope your only being facetious here. They deserve to lose their professional credentials and medical licenses, they deserve to face a courtroom for the intentional harm they have done to others and the frauds they have participated in, but violence is not acceptable.

 

[Esther12]

In my opinion, ME/CFS needs a helluva lot more ACT UP, and a lot less calm deference towards those that do us harm.

Silence = Death (or at least something at times resembling death).

I don't think anyone here wants deference to those who do us harm, but I do think that a lack of caution from patients has done more harm over the years than too much caution.

We should have t-shirts that say "Fuck Simon" and mugs that say "National Disgrace" below Trudeau Chalder's face.

Would things like this really be likely to benefit us?

A lot of the issues around ME/CFS/PACE are really complicated, as well as being really frustrating and upsetting. Getting caught up in expressing anger and frustration without an excellent understanding of all the details can easily be used against oneself. David is one of the few people I'd have confidence in being able to back up their frustration through really sustained and challenging debate.

While I might express my frustration quite casually here, if I'm communicating with someone outside of the ME/CFS world I always try to tone myself down as much as possible in order to reduce the risk of giving them something that can be used against us. It is irritating that progress has been so slow over the long time since problems with CBT/GET were being pointed out (which happened as soon as the research first emerged), but I think that the progress we've made recently is largely down to people taking a cautious and restrained approach. The PACE defenders love to try to distract people's attention from the real issues with stories of angry and unreasonable patients, and that's not a narrative that benefits us.

 

[Webdog]

I don't think anyone here wants deference to those who do us harm, but I do think that a lack of caution from patients has done more harm over the years than too much caution.

A lack of caution is how ACT UP finally got the NIH to fund HIV/AIDS research 30 years ago. We too should be united in anger and not afraid to (nonviolently) express that anger when appropriate.

 

[Esther12]

A lack of caution is how ACT UP finally got the NIH to fund HIV/AIDS research 30 years ago. We too should be united in anger and not afraid to (nonviolently) express that anger when appropriate.

There's been a lot of expressions of anger over the years, and a lot of citing of ACT UP. To me, that approach doesn't seem useful with ME/CFS. We're in a very different situation to that faced by HIV/AIDS campaigners 30 years ago.

 

[Webdog]

There's been a lot of expressions of anger over the years, and a lot of citing of ACT UP. To me, that approach doesn't seem useful with ME/CFS. We're in a very different situation to that faced by HIV/AIDS campaigners 30 years ago.

Fair enough. I disagree, but understand your position.

I remember the ACT UP protests. I also remember knowing people who died of AIDS waiting for the NIH to do something.

Also, in the 1980s, I remember angry diabetes patients and doctors forcing government to take the disease seriously and stop recommending inappropriate treatment methods.

But this has gotten off topic and my apologies for that.

 

[Alvin]

Also, in the 1980s, I remember angry diabetes patients and doctors forcing government to take the disease seriously and stop recommending inappropriate treatment methods.

Can you elaborate?

But this has gotten off topic and my apologies for that.

Most threads end up off topic eventually, but its no big deal, more gets said and more gets explored

 

[Mfairma]

I hope your only being facetious here. They deserve to lose their professional credentials and medical licenses, they deserve to face a courtroom for the intentional harm they have done to others and the frauds they have participated in, but violence is not acceptable.

Unless its actually the 1850s or the old west wherever you live, these are generally understood to be expressions for widespread and deep ridicule and public shaming, and, of course, the comment on deserving worse is relative to that. If you're being hyperbolic out of concern for BPS school finding fodder here, then fair enough, I've clarified.

But, the real concern should be, what crimes have the chickens committed?

If people want to advocate in a way that I would see as overly cautious and circumspect, then that's their prerogative, but do patients need to try to enforce that mindset on everyone within their orbit? Would getting pissed off about these issues and starting to speak about them in the strident terms that an honest assessment demands really be that harmful? Need every claim be couched in overtly clinical language when the reality is so much more stark and colorful?

I rode the subway earlier today and across from my seat was a nice poster for the upcoming AIDS walk that had the names of some famous celebrities, presumably participating or presenting, and a huge list of major companies and organizations sponsoring the walk. I struggle to imagine a future in which the same type of poster could not only be made for ME, but received in the same way that that poster is received.

 

[Daisybell]

I think we’re damned if we do and damned if we don’t.....
The public perception of pwme has been so influenced by the bps brigade and the media and government support for their ideology, that if we shout out, we run the risk of feeding their narrative. It’s a horrible but clever trap that we couldn’t help but get caught in.
Being utterly reasonable and just sticking to the facts without any emotion has helped us some way towards the point where the trap door might actually be open. But I’m not sure that we have reached a point of safety with that. Too much anger at this point, and I think the unreasonable/militant/just-lazy etc etc etc labels will still be rolled out against us.
The tide is turning though.

 

[Webdog]

Can you elaborate?

It was a long time ago (35 years?), and I'm not a diabetic. I hope I'm remembering this issue correctly.

I recall a doctor I knew and other diabetes doctors working with a diabetes association to force the Medical Board of California to stop recommending at-home urine blood sugar testing for insulin-dependent diabetics. The urine test could be wildly inaccurate and resulted in diabetics being unable to properly monitor and control their blood sugars.

This doctor was absolutely furious with the state medical board on this issue, fighting against the state passionately for his patients, and encouraging patients to also write letters.

 

[Cheshire]

The situation really is muddy. Someone like Vogt, for example, is on purpose very provocative and has started promoting his sick views (LP amongst them) using PwMEs' deaths to generate reactions amongst us.
Then he waits with glee at the perspective of all the outrage he'll get, and retweet with delight anything that looks ad hominen, enjoying every bit of mathyrdom he can.

 

[Jonathan Edwards]

The situation really is muddy. Someone like Vogt, for example, is on purpose very provocative and has started promoting his sick views (LP amongst them) using PwMEs' deaths to generate reactions amongst us.

I think it has become clear that Vogt is just a sick man who has become a quack, like the other Lightning people. Nobody in the medical establishment will take any notice of him. He might actually further the patients' cause by being such an idiot. I think he can be ignored completely.

 

[Jonathan Edwards]

Would getting pissed off about these issues and starting to speak about them in the strident terms that an honest assessment demands really be that harmful?

Yes. You may not be aware of the practical issues at the moment @Mfairma. Over the next few months the process of redrafting UK NICE guidelines will become set in stone with appointment of the committee members. At the moment we have dialogue with NICE through stakeholder meetings. If NICE staff get the clear impression that patients are unreasonable in the way that they have been painted by the medical establishment all they have to do is appoint the same old establishment committee members.

The situation for ME is unique in that being unreasonable and militant is seen as a specific feature of the illness. It is the perfect Catch22.

As things are my guess is that there is about a 40% chance that NICE will appoint reasonable committee members and the re-draft will downgrade CBT and GET at least to a degree. Sad to say I think there is a 60% chance that patients will be seen as emotional and unreasonable still and CBT and GET will remain in the guidelines. That will be much worse than we have now because it will not be changed for ten years. The situation is really very much on a knife edge.

I am a doctor, not a patient, and I see exactly what my colleagues perceptions of patients are. Any weak arguments from patients are evidence that patients should be placated with stakeholder meetings and then ignored.

So strident terms really would be harmful in a very specific way. We would lose the whole battle. In the USA that battle has already been won but there are different battles to fight.

 

[chrisb]

As things are my guess is that there is about a 40% chance that NICE will appoint reasonable committee members and the re-draft will downgrade CBT and GET at least to a degree.

Odds as bad as that suggest the need for a plan. Do we have one?

 

[Jonathan Edwards]

Odds as bad as that suggest the need for a plan. Do we have one?

Yes, we have plan A and plan B and plan C. More plans are welcome but I think various people are doing what they can and there are a few cards up sleeves. The pivotal event will be the late May stakeholder meeting. If things do not show signs of moving in the right direction then there may be a need for other tactics, but I think we should let NICE show they can respond first.

 

[Sasha]

@Mfairma, I completely understand your frustration and I think this is an important issue that deserves its own thread, but:

People that espouse these viewpoints should be drummed out of town, tarred and feathered, set up in stocks and pelted with tomatoes, and that's frankly the least of what they deserve.

Unless its actually the 1850s or the old west wherever you live, these are generally understood to be expressions for widespread and deep ridicule and public shaming,

But if you lived in Belfast in the UK in the 1970s, tarring and feathering was alive and well, thanks to the IRA: https://www.belfasttelegraph.co.uk/...ll-too-familiar-during-troubles-28397271.html

This BPS poison comes out of the UK, where I live, and the culture is different here to the US, and so are the cultural resonances. Given how effectively the BPS crew have been able to use a narrative of 'death-threats from patients' in the media, we are extremely sensitive to even a metaphorical reference to violence.

I'd be much happier if you'd remove all reference to it, @Mfairma, because in the UK, it is quite possible to read it literally.

Sorry not to address the rest of your post but I thought this was important.

 

[Sasha]

The situation for ME is unique in that being unreasonable and militant is seen as a specific feature of the illness. It is the perfect Catch22.

This is exactly it. Shouting and yelling and expressing anger - especially in a UK culture where that's seen as a breach of manners and 'not what we do' makes that anger less effective, not more, when you're labelled as a 'mental patient'. Catch 22 is exactly right.

 

[Alvin]

I recall a doctor I knew and other diabetes doctors working with a diabetes association to force the Medical Board of California to stop recommending at-home urine blood sugar testing for insulin-dependent diabetics. The urine test could be wildly inaccurate and resulted in diabetics being unable to properly monitor and control their blood sugars.

Interesting, i assume its not only inaccurate but debunked technique?

 

[Dr Carrot]

To me there is productive noise-making and unproductive noise making. People will likely have different definitions as to what this is, but to me, anything that helps push for better research, more funding for biomedical studies etc is productive. Tweeting people like Michael Sharpe or Henrik Vogt to me feels completely unproductive, though I understand that people probably feel like they want to let off some steam.

I always try to think how interactions would be perceived by a healthy onlooker. Many of the BPS proponents are more charming than ME patients, so I feel like the militant ME patient narrative is a very easy one to sustain with a few choice quotes. For example, I think I saw someone asking Vogt the other day whether any of his ancestors were Nazis.

Anyway I’m not quite sure what the happy medium is, but I feel like calling for people’s heads without doing the due diligence first (pointing to evidence for the removal of GET, getting cross party MPs onside) will not end very well for us.

 

[Jonathan Edwards]

Interesting, i assume its not only inaccurate but debunked technique?

I think the diabetes situation is a bit different. In the 1970s urine sugar tests were the only practical ones and there was not enough science to show that more accurate measurements made a difference. With electronic technology for home blood measurements and evidence of the importance of tight control things changed. They were a bit slow but I think that just reflects the inertia of health care systems that do not always have patients' best interests in frame. Better management was available and needed implementing. The situation for ME is rather different I think. Maybe the analogy with diabetes is that for a long time academic endocrinologists were in the pockets of drug companies making oral hypoglycaemic agents, which for a lot of diabetics were the wrong thing to use.

 

[Alvin]

Tweeting people like Michael Sharpe or Henrik Vogt to me feels completely unproductive, though I understand that people probably feel like they want to let off some steam.

When you don't say something your giving implicit validation, if people only see lies they start to believe them or don't look further. Its always important to challenge reality deniers publicly but its not a strategy for ultimate success, its only the most elementary first step, something not well understood.