Proposed new training module for Australia: CBT and GET

[simeyss]

Hi @simeyss,

Hi @Justin30

I am not from Australia but would like to well to visit their one day when they figure out how to fix me or I dind out how to fix me.

You should do that!

I did email them and so should everyone else that cares about about having PACE and these rediculous treatments stoped.

Thanks!
We have some good biomedical research going on here, but there is nonetheless a GET stronghold, being led by Lloyd and, like the Wessely school in the UK, he has influence.

I have template that can be easily adjusted to get your points in. Contact me if you want it.

I might do that. Several people have emailed them already, and the MEAction Oz working group is looking at ways of addressing some of these issues. An email template for those not able to draft their own is a good idea.

Any research that is not associated with Biological Work on well defined ICC/CCC patients should be contested regardless of where you are from.

I agree completely. Lloyd has had little scrutiny because we don't have a national body, and haven't had much in the way of organised advocacy (hopefully that is changing). So GET research can be done here, but will ultimately affect everyone. This online training course is a particular concern, because it is being billed as "best practice treatment". Worst case scenario is that it could be onsold to health practitioners in any country.

So many people write long...messages on PR and want change to occur yet.....i question how many PR MEMBERS will actually stop writing on PR and send an email to stop rediculous wasteful research.

I write this because I truly wonder how many people would rather argue research and studies instead of writing emails and signing petitions and participating with our organizations?

I may get called out for this but just thought I need to say something.

I know many here do countless things for the community and I am grateful to those that do what they can.

Yes! We need to spend our meagre spoons making our voices heard, not amongst ourselves, but amongst those who need to hear. There are many doing this already, and I'm so appreciative of their enormous efforts. And many are unable to do much or anything at all.

Groups like the Mason Foundation need to know that their decisions are being noticed by the entire community, and that we are unhappy with and concerned about the decisions they are making.

 

[simeyss]

they are going a better step further then that as their entry requirement needs abnormal 2 day exercise test to join .. how many studies have that requirement.. I think this may be only the second ive seen.. on that ground study deserves praise...it may well prove to be the best way to tell that a person has me.. so this one gives me mixed feelings

The RCT of the online GET/CBT course being proposed for health practitioners by Lloyd's Fatigue Clinic doesn't use a 2day CPET for participant selection. There is another GET study being funded by the Mason Foundation (unfortunately, we have so many right now, that it's hard to separate them), which is a video gaming exercise intervention. It's the video gaming study that is using the 2 day CPET during participant selection (we have been unable to clearly ascertain what diagnostic criteria the training manual uses, though the Fatigue Clinic uses Fukuda):

https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=370224&isReview=true

There is incongruity with this trial which, on the one hand is using 2 day CPET as part of participant selection (which, presumably is to identify those participants with abnormal VO2 max results, and therefore likely to have PEM), and on the other hand, is a dressed up GET trial with very few (almost no) safety measures in place to protect participants from exacerbation. So, selecting for the presence of PEM, then undertaking a research protocol that doesn't take its effects into account. Very concerning.

 

[taniaaust1]

The RCT of the online GET/CBT course being proposed for health practitioners by Lloyd's Fatigue Clinic doesn't use a 2day CPET for participant selection. There is another GET study being funded by the Mason Foundation (unfortunately, we have so many right now, that it's hard to separate them), which is a video gaming exercise intervention. It's the video gaming study that is using the 2 day CPET during participant selection (we have been unable to clearly ascertain what diagnostic criteria the training manual uses, though the Fatigue Clinic uses Fukuda):

oh thanks for explaining, you had me confused with the other study links ye s the video gaming get study. I thought people were referring to that then here to

https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=370224&isReview=true

There is incongruity with this trial which, on the one hand is using 2 day CPET as part of participant selection (which, presumably is to identify those participants with abnormal VO2 max results, and therefore likely to have PEM), and on the other hand, it is a dressed up GET trial with very few (almost no) safety measures in place to protect participants from exacerbation. So, selecting for the presence of PEM, then undertaking a research protocol that doesn't take its effects into account. Very concerning.

yesi think its one of the strangest studies ive seen. hence why I wondered if its trying to show harm of get, surely they do not think those with proven exercise intollence and selected for that will recover with exercise

I will delete my other post seeing I confused studies

 

[taniaaust1]

. This online training course is a particular concern, because it is being billed as "best practice treatment". Worst case scenario is that it could be onsold to health practitioners in any country.
.

nods so why everyone should be worried about it

 

[simeyss]

hence why I wondered if its trying to show harm of get, surely they do not think those with proven exercise intollence and selected for that will recover with exercise

From what I understand (though we are trying to get some clarity), this project is based on research in other chronic illnesses which shows that exercise reduces inflammatory markers (hence the blood draws). There isn't anything in the study outline which indicates an understanding of the potential harm from exercise. If the intention was to demonstrate harm from GET, this would have to be clearly explained in the outline, as well as having thorough safety measures in place. None of these are included in the study. Lack of safety measures suggests underlying thinking by the researcher that harm isn't a consideration.

The fundamental issue, of course, is of an exercise intervention being proposed (yet again) for a population for whom exercise intolerance (not fear or dislike) is a primary feature.

 

[jimells]

Yes! We need to spend our meagre spoons making our voices heard, not amongst ourselves, but amongst those who need to hear.

Posts on this forum are not just amongst ourselves. The NIH pays close attention to the forums and websites of advocates. So do the PACE People - they have specifically mentioned Phoenix Rising on numerous occasions. In fact they are so afraid of us that they tell new patients to stay away from the forums.

Our voices are louder than we realize.

 

[simeyss]

Posts on this forum are not just amongst ourselves. The NIH pays close attention to the forums and websites of advocates. So do the PACE People - they have specifically mentioned Phoenix Rising on numerous occasions. In fact they are so afraid of us that they tell new patients to stay away from the forums.

Our voices are louder than we realize.

I guess I think of that more as them listening in on our conversations... not quite the same as communicating with them directly.

 

[jimells]

I guess I think of that more as them listening in on our conversations... not quite the same as communicating with them directly.

Yes, it is a slight twist on the "Speak truth to power" slogan.

 

[GreyOwl]

This is a recent article from a well respected source which tears heavily into PACE:

http://www.stats.org/pace-research-sparked-patient-rebellion-challenged-medicine/

And David Tuller's lengthy and exhaustive run through the issues, as well as a few other things, can be found here:

http://www.virology.ws/mecfs/

@worldbackwards Thanks for those. Do you happen to have the link to the letter to the Lancet signed by 36 of the world's leading ME/CFS researchers handy?

ETA: Found it! http://www.virology.ws/2016/02/10/open-letter-lancet-again/

 

[GreyOwl]

I have a letter to send to the Mason Foundation - is anyone willing to read it for me to check my facts?

 

[CCC]

Write to your local MP and cc copies to the others contesting the seat. Do this especially if you live in a marginal seat. A letter has more weight than an email, or so we've been told.

 

[Hutan]

Of relevance:

http://emerge.org.au/about-mecfs/diagnosis/managing-symptoms-daily-basis/exercise-mecfs/

Late to this thread sorry, but just by the way..
Emerge is the ME/CFS and Fibromyalgia patient advocacy and support organisation covering most states (edit: in Australia). It seems to have got a bit more politically active of late, in a good way. And this summary of the issues around exercise and ME/CFS is good and comprehensive.

But for all Australians with ME/CFS (and any one else looking for further evidence of the insidious impact of the PACE trial), note that the Emerge article says:

In Melbourne for example Dr Michael Oldmeadow might refer patients to the Active Health Clinic in Blackburn, where they offer an exercise program and a “holistic approach”.

My doctor said that she felt Active Health Clinic could help my son and I and was very keen for me to try it. Googling it, you find that it is directed by Nathan Butler who proudly notes his association with the PACE trial on the clinic's website.

Nathan is an accredited exercise physiologist with 14 years experience working as the coordinator of specialist inpatient and outpatient programs at the Austin Hospital in Melbourne and at the Royal Free Hospital in London in the areas of CFS as well as cardiac, respiratory and orthopaedic rehabilitaion. Whilst in the UK Nathan was involved in the PACE study which investigated treatment modalities for CFS and the study was recently published in the Lancet. In 2008 Nathan established Active Health Clinic with his values of long term self management through knowledge, compassion and trust leading to Active Health Clinic being a leader in it’s field.

(yep, grammar isn't one of his strong points)

This is from a 2009 news article:
http://www.theaustralian.com.au/new...me-can-be-beaten/story-e6frg8y6-1225761725251

That's a drop in the CFS ocean, according to program co-ordinator and exercise physiologist Nathan Butler. Butler spent six years working in Britain's Churchill, Kings College and Royal Free hospitals in similar programs. He says the Austin's treatment plan dates back to 1988. Like the British therapies, its core is a program tailored to fight the physical and mental deconditioning that causes and worsens CFS: ``It's not a quick-fix. There're no magic cures. We don't really know what's going on underneath.''

The treatment aims to break the ``boom and bust cycle'' of CFS, a term used to describe the tendency for sufferers to do too much when they feel OK and too little when they're at their worst. It gives patients a greatly improved baseline of health, meaning they recover completely or are able re-enter a normal life without exacerbating symptoms.

I rang the clinic a couple of years ago as, at the time I was thinking about validating our illness via a 2 day CPET, and spoke to one of the clinicians. They had never heard of CPET or vO2-max and had no idea where this kind of testing could be done. And this is the clinic claiming to be expert in exercise physiology, specifically for ME/CFS. I reported all this back to my doctor who knew me better than to keep pushing the idea of the clinic - but I am pretty sure she would still recommend the clinic to others.

Emerge (well, ME/CFS Australia as it was before it re-branded) appears to have had a comfortable relationship with Nathan Butler (and Dr Oldmeadow, the ME/CFS specialist doctor who referred lots of Melbourne patients to Butler and ran/runs? a rehabilitation clinic for adolescents with ME/CFS at the Austin Hospital). See for example this 2014 Emerge page which promotes Butler's clinic.
http://emerge.org.au/exercise-movement/#.Vxy6U1Ks5Cg

Nathan Butler has worked with Lionel Lubitz who is a senior clinician at the Chronic Fatigue Clinic at the Royal Childrens' Hospital in Melbourne. The Royal Childrens' Chronic Fatigue Clinic offers a residential rehabilitation program for children and adolescents with ME/CFS involving diet, sleep, GET and CBT. Dr Chris O'Callaghan, who treats OI in Melbourne, is very friendly with Lubitz and strongly promotes GET as a treatment for OI (with or without ME/CFS). Basically, if you are an ME/CFS patient in Melbourne, GPs will direct you to PACE-style GET.

Anyway, up until recently I would have been doubtful about Emerge's willingness to battle against stupidity such as this training module for CBT and GET. But I think that is changing. I hope so.

 

[RustyJ]

Late to this thread sorry, but just by the way..
Emerge is the ME/CFS and Fibromyalgia patient advocacy and support organisation covering most states. It seems to have got a bit more politically active of late, in a good way. And this summary of the issues around exercise and ME/CFS is good and comprehensive.

But for all Australians with ME/CFS (and any one else looking for further evidence of the insidious impact of the PACE trial), note that the Emerge article says:



My doctor said that she felt Active Health Clinic could help my son and I and was very keen for me to try it. Googling it, you find that it is directed by Nathan Butler who proudly notes his association with the PACE trial on the clinic's website.

(yep, grammar isn't one of his strong points)

This is from a 2009 news article:
http://www.theaustralian.com.au/new...me-can-be-beaten/story-e6frg8y6-1225761725251


I rang the clinic a couple of years ago as, at the time I was thinking about validating our illness via a 2 day CPET, and spoke to one of the clinicians. They had never heard of CPET or vO2-max and had no idea where this kind of testing could be done. And this is the clinic claiming to be expert in exercise physiology, specifically for ME/CFS. I reported all this back to my doctor who knew me better than to keep pushing the idea of the clinic - but I am pretty sure she would still recommend the clinic to others.

Emerge (well, ME/CFS Australia as it was before it re-branded) appears to have had a comfortable relationship with Nathan Butler (and Dr Oldmeadow, the ME/CFS specialist doctor who referred lots of Melbourne patients to Butler and ran/runs? a rehabilitation clinic for adolescents with ME/CFS at the Austin Hospital). See for example this 2014 Emerge page which promotes Butler's clinic.
http://emerge.org.au/exercise-movement/#.Vxy6U1Ks5Cg

Nathan Butler has worked with Lionel Lubitz who is a senior clinician at the Chronic Fatigue Clinic at the Royal Childrens' Hospital in Melbourne. The Royal Childrens' Chronic Fatigue Clinic offers a residential rehabilitation program for children and adolescents with ME/CFS involving diet, sleep, GET and CBT. Dr Chris O'Callaghan, who treats OI in Melbourne, is very friendly with Lubitz and strongly promotes GET as a treatment for OI (with or without ME/CFS). Basically, if you are an ME/CFS patient in Melbourne, GPs will direct you to PACE-style GET.

Anyway, up until recently I would have been doubtful about Emerge's willingness to battle against stupidity such as this training module for CBT and GET. But I think that is changing. I hope so.

I appreciate this info as it confirms suspicions I have had with the org. I have tried to be supportive of Emerge in my blog and their efforts to garner support for extra funding (probably for themselves), however I note they are very soft on criticism of GET and CBT. They tend to sit on the fence rather than openly criticise these therapies. But I couldn't pin down anything concrete.

I don't think I will be as supportive of Emerge in the future. They do not say they do not support CBT and GET, and note that some patients find these therapies useful.

Regarding the opposition to the training module, I suspect you are referring to a contributed article by Sasha Nimmo, however I am not sure this article is representative of the policies of the org. I have seen no official Emerge statement regarding the module.

Also the letter Emerge wrote supporting the release of the PACE data may not have been sent according to a third party source. Regardless, opposition to PACE does not necessary mean opposition to GET and CBT.

 

[simeyss]

Emerge is the ME/CFS and Fibromyalgia patient advocacy and support organisation covering most states (edit: in Australia). It seems to have got a bit more politically active of late, in a good way. And this summary of the issues around exercise and ME/CFS is good and comprehensive.

My doctor said that she felt Active Health Clinic could help my son and I and was very keen for me to try it. Googling it, you find that it is directed by Nathan Butler who proudly notes his association with the PACE trial on the clinic's website.

I have to agree with you. I contacted AH a couple of years ago, wanting an exercise physiologist to help me implement an exercise program, following the Workwell model. Nathan told me that they don't do that type of program, only GET and that they had had no one have adverse responses to it. I emailed back to ask why they didn't use the Workwell model and whether they would be willing to do a pilot using me as a guinea pig (& to indicate that I knew of people who had had adverse reactions to AH's approach) and he stopped responding to my emails. Not surprising, given his connection to PACE (though interestingly, he distanced himself from PACE in his emails to me... seems to be the thing to do. Andrew Lloyd's group is doing that too).

A point of clarification: Emerge covers 3 states in Australia (Vic, Tas & NT), though it does have members from other states. Emerge wasn't ever called ME/CFS Australia, that was the name of the now defunct national body (we currently have no national body). Emerge used to be called ME/CFS Vic/Tas/NT, but rebranded as Emerge Australia a few years ago with the intention of becoming a national society, and taking on a stronger lobbying role, though those plans have been hampered by funding cuts.

 

[Hutan]

I don't think I will be as supportive of Emerge in the future.

I felt the same when I tried unsuccessfully to get their help to address the awful research study being carried out at the Royal Childrens' Hospital In Melbourne (titled 'Understanding CFS' but just ongoing questionnaires that seem very narrowly designed to show children with ME/CFS are neurotics with poor sleep hygiene with parents who are facilitating their illness).

BUT I don't think we should give up on Emerge now that they are getting a bit more vigorous about challenging the status quo. I think they need encouragement to be brave and accountable. No doubt there are people with a variety of viewpoints in the organisation.

 

[simeyss]

Also the letter Emerge wrote supporting the release of the PACE data may not have been sent according to a third party source. Regardless, opposition to PACE does not necessary mean opposition to GET and CBT.

I'm not sure of your third party source. I have had confirmation from Emerge's President that the PACE letter was sent, and I have no reason not to believe her.

I agree with you that opposition to PACE does not necessarily mean opposition to GET/CBT. From conversations I've had with Emerge's leadership, I believe that they are opposed to GET/CBT, though I think their position needs to be made clear publicly, and needs to be congruent throughout their messages (eg: a plug on their website for a clinic & a specialist which are GET proponents, isn't consistent with the position of being opposed to GET).

 

[Sean]

Nathan told me that they don't do that type of program, only GET and that they had had no one have adverse responses to it.

 

[Sea]

Nathan told me that they don't do that type of program, only GET and that they had had no one have adverse responses to it.

Too often I think people either:
just stop going to something which is not helping or making them worse without making it clear why they're leaving,

or: they pretend they're doing a program without really doing it (usually because doctor or welfare help depends on it)

or: they replace activities of daily living with the exercise program and believe they've improved when they really haven't made any change.

Clearly someone with an open mind would follow up patients and question why there was a huge drop-out rate or no real progress in fitness or exercise tolerance, but I think those with a belief in a program and an illness model will continue to choose explanations that fit their beliefs.

 

[JaimeS]

A petition is in the works on this topic at #MEAction. It should be live this week.

 

[JaimeS]

A petition is in the works on this topic at #MEAction. It should be live this week.

The original submission did a great job of locating contact information, but unfortunately did not attach a sample letter for people to use. If anyone would like to draft one to add to the current call for action, I would definitely appreciate it, and I really think people with cognitive issues would feel more comfortable/able to cut-and-paste than come up with a reasoned objection if their brain fog is bad this week.

The article will come out on April 27th at this point. (I say this because sometimes, things shift around.) Feel free to PM me with such a thing (or a request for more information) at any point until late tomorrow evening, EST.

If you do choose to craft a form letter for the article, remember: the more dramatic the language, the less impact it tends to have on the skeptical reader.

The most impact comes from saying something horrifying in an 'even tone'.

-J