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Fatigue Clinic, University of NSW

Richard7

Senior Member
Messages
772
Location
Australia
@rose1 I have no experience of them, but from other threads on this site I understand that they seem to be into GET and CBT.

I have not bookmarked those threads but did bookmark this which may be useful.

http://www.meaction.net/2016/04/29/tell-unsw-to-cancel-physician-training-in-get-and-cbt/

There is a lot of info on the site re GET and CBT. The premise is that CFS/ME is a false illness belief :that you are ill because you think you are. And their idea is that doing cognitive behaviour therapy to confront and "re-educate" the patient about that false belief coupled with graded exercise therapy (gradually increasing levels of physical activity) will make you well.

Re physical activity I would instead suggest that look into the workwell foundation http://www.workwellfoundation.org/research-and-latest-news/ . They are american, so out of reach, but you can watch their videos and they seem to know what they are talking about re physical exertion. I wish I had known about avoiding aerobic exercise and PEM when physios and others were advising me to keep walking and doing other things that were triggering PEM. Just hearing that there was another point of view would have been great.
 

Hutan

Senior Member
Messages
1,099
Location
New Zealand
@rose1 - have a look at this thread. There's a video with Prof Andrew Lloyd and some of the staff talking about what I think is the same clinic you have asked about.

http://forums.phoenixrising.me/inde...d-cbt-advised-for-me.37330/page-2#post-593191

I wrote the following based on the video:

Regarding his fatigue clinic, Prof Lloyd reported that around 30% of the patients attending improved as a result of the ‘intervention’. He said that he thought that about 70% of the participants have CFS. The clinic relies on the diagnosis made by GPs (primary care physicians) and they don’t do any checking of that. He wasn’t worried that patients with say depression alone were turning up at the clinic as he felt that the clinic could help them too.

He noted that many CFS patients get better without treatment early in the course of the illness – his Dubbo study showed that. He said that the average number of years of illness of the patients attending the clinic is 5.5 years, so he felt that they were getting the patients with more resistant illness (although that average allows for a significant proportion of people who have had the illness for less than 5.5 years).

It was very interesting to hear from the fatigue clinic clinician about what is actually done in the clinic. The GET sounded much more like gentle pacing. The clinician actually mentioned that they often have to get people to initially do less activity rather than more. The two patients touted as success stories appeared to have had quite mild CFS cases when they started the intervention and are still sick now. What they reported was gaining an understanding of their own illness and how to live better within the energy constraints imposed by the illness.

The fatigue clinic clinician was very sweet and empathetic. It would be a very irritable patient indeed who would report, in the 12-week questionnaire, that all her effort for the patient had achieved nothing at all. There doesn’t seem to be any long-term follow-up. There hasn't been any rigorous analysis of the outcomes of his fatigue clinic.

So, I don't think there is much hope that the clinic will help much beyond what you could achieve by researching and applying pacing techniques. I myself would not go near it.
 

rose1

Guest
Messages
12
Location
Sydney, NSW, Australia
@rose1 I have no experience of them, but from other threads on this site I understand that they seem to be into GET and CBT.

I have not bookmarked those threads but did bookmark this which may be useful.

http://www.meaction.net/2016/04/29/tell-unsw-to-cancel-physician-training-in-get-and-cbt/

There is a lot of info on the site re GET and CBT. The premise is that CFS/ME is a false illness belief :that you are ill because you think you are. And their idea is that doing cognitive behaviour therapy to confront and "re-educate" the patient about that false belief coupled with graded exercise therapy (gradually increasing levels of physical activity) will make you well.

Re physical activity I would instead suggest that look into the workwell foundation http://www.workwellfoundation.org/research-and-latest-news/ . They are american, so out of reach, but you can watch their videos and they seem to know what they are talking about re physical exertion. I wish I had known about avoiding aerobic exercise and PEM when physios and others were advising me to keep walking and doing other things that were triggering PEM. Just hearing that there was another point of view would have been great.
Thanks for the links Richard, I'm feeling a bit more informed now.
 

rose1

Guest
Messages
12
Location
Sydney, NSW, Australia
@rose1 - have a look at this thread. There's a video with Prof Andrew Lloyd and some of the staff talking about what I think is the same clinic you have asked about.

http://forums.phoenixrising.me/inde...d-cbt-advised-for-me.37330/page-2#post-593191

I wrote the following based on the video:



So, I don't think there is much hope that the clinic will help much beyond what you could achieve by researching and applying pacing techniques. I myself would not go near it.
Thanks Hutan, the video gave me a bit more info on the clinic.