Suggestions to discredit GET/CBT therapy in Australia

[Kenny Banya]

As some of you are already aware, New South Wales University in Australia has set up a fatigue clinic to treat ME sufferers with GET/CBT.
https://medicalsciences.med.unsw.edu.au/community/lifestyle-clinic/services/fatigue-clinic

Then there is this comprehensive post on the ME Australia website
https://meaustralia.net/2016/03/31/...e-studies-use-potentially-harmful-guidelines/

I have just sent an email to Professor Andrew Lloyd stating that he is promoting junk science & garbage treatments with his 'research' (yes, those words). It wasn't pretty.

This needs to be nipped in the bud ASAP. It takes a match to start a bushfire & we can't have multitudes of practitioners across Australia thinking GET/CBT is helpful & doing subsequent damage.

Any suggestions?

 

[Sean]

we can't have multitudes of practitioners across Australia thinking GET/CBT is helpful & doing subsequent damage.

Sadly, I think that horse has long bolted. Perhaps not quite as far as in the UK, but still well clear of the stable and heading in the same direction. And it is very unlikely to change under the current government, who want every excuse they can find for their vicious welfare-bashing.

 

[slysaint]

Any suggestions?

I don't know a lot about how things work in Oz but you could use this:
http://www.meassociation.org.uk/201...bt-and-get-occupy-m-e-website-16-august-2016/

see also this thread http://forums.phoenixrising.me/inde...ister-for-health-simon-harris-td.47865/page-2
"'The HSE has temporarily removed the content relating to ME/Chronic Fatigue Syndrome from the "Health A to Z" on HSE.ie. The content will be reviewed by the appropriate health professionals and re-published once that review is complete.'"

 

[Esther12]

I have just sent an email to Professor Andrew Lloyd stating that he is promoting junk science & garbage treatments with his 'research' (yes, those words). It wasn't pretty.

I'd recommend being cautious and rigorous in the claims one makes. There's an effort to discredit patients by presenting them as unreasonable and hostile, and anything which could seem like that to other academics is likely to be unhelpful. Did you first clamly go into the details of the problems with the research underpinning claims about the value of CBT and GET?

Sending an e-mail to a researcher you don't like just to let off steam is unlikely to be useful. Personally, I don't bother e-mailing researchers I don't respect, because I can't imagine that it will lead to a fruitful discussion, particularly when they are so evasive and manipulative even in their public statements.

 

[CCC]

Every doctor we have seen in Canberra and Sydney (including my own surgeon for unrelated things) has specifically warned us against going near psychologists. Even the chemists here are sympathetic. It's just that most of the doctors here don't actually know what to do (there are two I know of with some idea, and one of them is our amazing doctor).

The main problem people here seem to have is if they have Lyme - I have heard of one doctor who might diagnose it.

We had one very bad experience at the start, but just changed doctors (that doctor always has a spare appointment when you ring up - wonder why?). In the past six months, I haven't had to explain chronic fatigue at all.

I think maybe that interview by Ron Davis last year or the year before had a big impact. People at work heard it on the radio, and suddenly they understood how bad it could be.

I've thought about approaching our local MPs about the Sydney research. Not sure it's worth it in one of the safest seats in the country.

 

[Kenny Banya]

I don't know a lot about how things work in Oz but you could use this:
http://www.meassociation.org.uk/201...bt-and-get-occupy-m-e-website-16-august-2016/

see also this thread http://forums.phoenixrising.me/inde...ister-for-health-simon-harris-td.47865/page-2
"'The HSE has temporarily removed the content relating to ME/Chronic Fatigue Syndrome from the "Health A to Z" on HSE.ie. The content will be reviewed by the appropriate health professionals and re-published once that review is complete.'"

I think these are great ideas! Thanks heaps!
I will meet with both the Minister & Shadow Minister for Health (as polls are constantly indicating the current government will be booted in 2 years, hence worth meeting the Shadow Minister)

 

[Kenny Banya]

I'd recommend being cautious and rigorous in the claims one makes. There's an effort to discredit patients by presenting them as unreasonable and hostile, and anything which could seem like that to other academics is likely to be unhelpful. To you fist clamly go into the details of the problems with the research underpinning claims about the value of CBT and GET?

Sending an e-mail to a research you don't like just to let off steam is unlikely to be useful. Personally, I don't bother e-mailing researchers I don't respect, because I can't imagine that it will lead to a fruitful discussion, particularly when they are so evasive and manipulative even in their public statements.

I didn't email him to 'engage' - I already knew in advance he wouldn't be interested in what I had to say.

 

[Esther12]

I didn't email him to 'engage' - I already knew in advance he wouldn't be interested in what I had to say.

What were you trying to achieve? We have seen how researcher's concerns about angry e-mails have been used to hurt patients trying to improve standards of research.

 

[Murph]

I'd suggest alerting potential staff and patients to say that sure, when he first chose to set up the clinic, evidence published in reputable journals pointed to CBT/GET being the best solution. However, with the release of evidence on PACE and progress in Norway, Melbourne and the USA, care delivered under a CBT/GET model is no longer clearly best practice.

In fact, evidence is emerging that it could well be harmful. It's unfortunate. But science is like that. Old models fail and the best approach is to move on from them when they do

"When the facts change, I change my mind. What do you do, Sir?" - Keynes.

Perhaps the best way to provide this information would be a website with good SEO so it pops up when you google CFS Sydney or UNSW fatigue clinic. The website could link to all the relevant papers. It'd be important to give it a clean look so it did not look like the work of a crank. Deprive the concept of credibility and make it clear to patients and potential staff that being involved with it is risky.

 

[Kenny Banya]

I'd suggest alerting potential staff and patients to say that sure, when he first chose to set up the clinic, evidence published in reputable journals pointed to CBT/GET being the best solution. However, with the release of evidence on PACE and progress in Norway, Melbourne and the USA, care delivered under a CBT/GET model is no longer clearly best practice.

In fact, evidence is emerging that it could well be harmful. It's unfortunate. But science is like that. Old models fail and the best approach is to move on from them when they do

"When the facts change, I change my mind. What do you do, Sir?" - Keynes.

Perhaps the best way to provide this information would be a website with good SEO so it pops up when you google CFS Sydney or UNSW fatigue clinic. The website could link to all the relevant papers. It'd be important to give it a clean look so it did not look like the work of a crank. Deprive the concept of credibility and make it clear to patients and potential staff that being involved with it is risky.

Yep, some good suggestions, particularly website & SEO.
For example, there's a statistician & part time academic named William M Briggs who is an anthropogenic global warming denier. He is very knowledgeable & can articulate a 'refutation' of the science quite well. However, when you Google his name, one of the first few results that comes up belittles his scientific knowledge.
So, yes well crafted SEO can be effective

 

[BurnA]

There's an effort to discredit patients by presenting them as unreasonable and hostile, and anything which could seem like that to other academics is likely to be unhelpful.

It's time to get over this. The only effort to discredit patients is the BPS crew because they are afraid of their careers disappearing, why should we be fearful of that.

Who exactly are the other academics, the ones who have remained silent throughout all this debacle and said nothing.?


We really need to be making a lot more noise than we are.

 

[Esther12]

It's time to get over this. The only effort to discredit patients is the BPS crew because they are afraid of their careers disappearing, why should we be fearful of that.

Who exactly are the other academics, the ones who have remained silent throughout all this debacle and said nothing.?

We really need to be making a lot more noise than we are.

I'm not saying that we shouldn't make noise, but there's just no doubt that the prejudices promoted about ME patient advocates are causing big problems for our attempts to raise standards for ME research. Things that needlessly play into these stereotypes are likely to be unhelpful.

There are a lot of academics who've stayed silent, and avoided engaging with concerns about PACE, and have privately let it be known that this is because the area is too "heated", "adversarial", whatever. Generally, I think that this is pathetic and driven by prejudice, but there's no point pretending that it's not a problem, or that when in a position of facing prejudice, it's not easy to make things worse.

I'm all for challenging people forcefully, but it should be done in as reasonable and calm a way as possible, with full explanations of the complaints being made. With advocacy work it is worth thinking about the costs and benefits of what is being done.

 

[CFS_for_19_years]

I have just sent an email to Professor Andrew Lloyd stating that he is promoting junk science & garbage treatments with his 'research' (yes, those words). It wasn't pretty.

Did you include any links to published papers that discredit the PACE trial? Scientists like published papers.

 

[lafarfelue]

The best way to make noise in Australia is to contact your local member and raise the issues with them, to then raise the issue with the relevant state and/or federal minister.

It needs to be widespread (as many ME/CFS advocates and patients across Australia as possible), with consistent messaging.

Some information by Julian Burnside on how to write to Federal MPs here. Read this information, it's really important, like:

There are some things you need to bear in mind if you write to MPs:​

1. 1. Don’t tell them what you think: they are not listening.
   2. Ask just one or two questions.
   3. Ask questions which ask what they think. If they pass the letter to someone else to answer (eg, the Minister or shadow Minister, you will see they are not willing to give their own opinion.
   4. Keep the letter SHORT. It is harder for them to disguise the fact that their response is not an answer to your question.

Letters are good! Emails are okay (depends on each member and MP). Phone calls will do in a pinch.

Here is some information about whom to contact:

• Find your federal electorate here and representative here.
• Find your VIC electorate here and representative here.
• Find your SA electorate here. and representative here.
• Find your NSW electorate here and representative here.
• Find your WA electorate here and representative here.
• Find your ACT electorate here and representative here.
• Find your NT electorate here and representative here.

As for the content of the letters, and what would be really good (not 'easy'!) questions to ask, I hope that someone else with more experience than me in the ME/CFS field with some vague political know-how can assist with that. I'm sure that we all want to know that when we write, that we're making the most effect possible.