For Aussies

[Snow Leopard]

Well, in Belgium they trialed an expensive a multidisciplinary treatment program combining CBT, GET and physiotherapy. What was the result you ask? No improvements in the amount of volunteer or paid employment and more people on welfare afterwards.

See:
http://forums.aboutmecfs.org/showth...f-Belgian-CBT-GET-rehab-clinics-(large-sample)

There have also been studies that show that GET isn't actually GET - activity levels don't increase, the patient simply substitutes.

Perhaps we need to arm patients with the facts.

 

[insearchof]

Perhaps we need to arm patients with the facts.

That is an interesting study and could prove very useful.

As most patients are aware of the facts - not only about the inadequacies of GET - but also about their illness (most being far more knowledgable than may doctors and politicians) - I dont believe that is the answer.

Educated ill patients ,espousing facts as they are forced to undergo GET in exchange for their DSP wont help very much, but a protest campaign targeted at politicans might ensure that patients never have to undergo this.

ISO

 

[taniaaust1]

Perhaps we need to arm patients with the facts.

going places armed with the facts, Ive personally found dont help. Most doctors wont read what you take in to them and if one is dealing with job agencies for the disabled.. they dont seem to want to research it either (well at least the one i was involved in didnt.. they consider they know enough so arent interested in knowing more).

The only way facts will help us is by lots of us campaigning and getting the facts out with that.. before things change for the worst.

 

[taniaaust1]

I hope your right Tuliip, but unfortunately with the idea that GET is all we need and that we get well if we stick with the program (according to Lloyd) - then those with CFS may be seen as roting the system.

Maybe we just have to refer Lloyd to the presentations made at the State of Knowledge seminar in the USA - which indicates a lot of serious physiological manifestations - which will never be rectified by GET.

For example, Dr John Chia finds that over 70% of patients have persistent enteroviral infections. He has identified a method of ascertaining viral load present and equating that with level of disability. Those with a level 2 staining he said, are completely disabled.

I dont see how lloyd et al can maintain GET in light of evidence presented at the state of knowledge conference on CFS that would suggest underlying physiological abnormalities cannot be remedied by such and that patients abnormalities result in a disabling illness.

More noise about this matter should be made.

Im sure Lloyd with all his interests http://notes.med.unsw.edu.au/SOMSWeb.nsf/page/resinterestsshowperson?OpenDocument&staffid=9300473 and having been involved with CFS/ME for a long time and at high levels of things (eg he's done big studies with Suzanne Vernon and also with the CDC aka William Reeves (who used to be head of the CDC CFS program) http://www.bmj.com/content/333/7568/575.full?sid=a01109c6-3eb2-4786-a95c-7ca9dc13316e ... he would be well aware of all the controversy which goes on and about physical findings but he still backs GET. (and possible Wessely field). I see Lloyd as a person of power due to his high connections... someone we possibly need to watch.

 

[Sean]

I see Lloyd as a person of power due to his high connections... someone we possibly need to watch.

And Prof. Ian Hickie.

 

[taniaaust1]

And Prof. Ian Hickie.

ah yeah... how can i forget Hickie.

We could so easily end up like the English situation

 

[TinyT]

Scary situation and possibly likely

 

[Tulip]

.........................................

 

[insearchof]

Tania

Those who have been around long enough know about Lloyd et al and their affiliations. I was not suggesting that they be made aware of the point I raised.

ISO

 

[Snow Leopard]

The only way facts will help us is by lots of us campaigning and getting the facts out with that..

I think that is an implicit part of the benefits of arming the patients with the facts...

BTW, the Lloyd Dubbo studies were funded by the CDC and weren't exactly bad studies. But I agree they are no longer helpful. There is a definite change in the tone of the Hickie/Lloyd papers from the 90s to the 00s.

Thesis topics for current UNSW Medicine postgraduate research students
2. Investigations of the conscious sensation of fatigue in patients with chronic fatigue.

*facepalm*

 

[insearchof]

Snow Leopard - most patients that have had this illness and had their lives turned on it's head for more than 6 months make an effort to educate themselves and have the facts. Ask any Dr who specializes in CFS.Facts without directing them effectively do little. They have though assisted some get better health care, but only if the Dr has an open mind and is willing to listen.

The Societies have been providing patients with facts for years...it is necessary to keep the community on top of current affairs, but as a single strategy is not the answer.

The patients are not the ones that need the facts.. Promoting the facts to Lloyd et al is a waste of time.

We need to present facts to the wider community and to parliamentarians and lawyers.

However, with the current threat to DSP promoting the Belgium experience to patients would be a good idea as it is a fact that they might not have come across and might assist in a letter writing campaign against the mooted removal of DSPs for PWCFS

 

[taniaaust1]

BTW, the Lloyd Dubbo studies were funded by the CDC and weren't exactly bad studies.

yes and no.. good topics but I think they used an American CFS definition (it may of been the Empirial one) to get their study participants rather then the CC CFS one which the societies have tried to push over here. Many what would of been good studies have been ruined by watering down patient group.