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talkhealth forums • GET - useful or risky? - Page 2
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Re: GET - useful or risky?

Posted: Wed Aug 14, 2013 4:27 pm
by hippyangel
I did a course of GET about a year ago. It was a little worrying reading things about it, however I am quite a bit improved. I manage to do so much more. It was through the NHS. They started me off slowly after thoroughly assessing me. I'm not cured by any sense but I have a better idea how to manage my illness and pace my life.

Re: GET - useful or risky?

Posted: Wed Aug 14, 2013 4:36 pm
by Laurellen
Jessica Bavinton wrote: I agree, the evidence in favour of GET significantly outweighs any anecdotal evidence against. What's important is that the programme is delivered according the NICE guidelines and PACE protocol.

I'd suggest looking up BACME:
http://www.bacme.info/localservices/
One problem is that the evidence available in this area is so very poor, and often presented in confusing ways by those whose careers depend upon the promotion of GET as an effective treatment.

It is all very well to talk about the importance of following the PACE protocols for treatment, but the PACE researchers showed very little interest in following their own protocol [1] for how to present their results in a meaningful manner.

In their protocol's criteria for recovery, patients were required to have an SF36-PF score (using a questionnaire used to measure disability) of 85 or over. A score of 75 or over was required for a patient to be classed as having had a 'positive result', and a score of 65 or under was used as part of the criteria for severe fatigue and disability which required treatment [1]. Now that they have to release their results, they are claiming that a score of just 60 indicates a patient has a 'normal' level of disability, and can be considered recovered [2,3].

Initially, the move to a score of just 60 was justified by the claim that this represented the mean - 1 standard deviation of scores for the working age population. It has now been recognised by even the PACE researchers that this is false. More recently, they have tried to justify the change in their recovery criteria from requiring a score of 85 or more, to one that required a score of just 60 or more by claiming that nearly half of the working age population has a score of under 85. If one examines the data cited, this is also clearly false [4], although the PACE researchers have yet to admit this publicly.

If this were not already worrying enough, some have gone further. The chair of BACME, Esther Crawley, was the corresponding author on a paper which claimed that PACE showed "cognitive behavioural therapy and graded exercise therapy indicated a recovery rate of 30-40% one year after treatment" [5]. Even when using the new and drastically weakened criteria for recovery, the reported recovery rates were actually only 7% for SMC, 22% for SMC + GET, and 22% for SMC + CBT; so CBT and GET could only be said to lead to an additional 15% of patients recovering, even by the low standards of the PACE researchers [3]. Given the danger of response bias for those patients who are being encourage to believe that they have more control over their symptoms, and then trying to fill in questionnaires more positively (and the fact that PACE showed CBT and GET leading to no improvements for numbers of patients on incapacity benefits, or able to work) it is quite possible that despite all the time and effort patients put in to CBT and GET programmes, they led to no real improvements in health, despite the dramatic claims being made by some researchers and clinicians.

Currently, those involved with PACE are refusing to allow patients access to the data on the outcome measures laid out in their own protocol, making it harder for those with CFS to make informed decisions about their own treatment [6]. Hopefully we are slowly moving towards a point when this is not seen as acceptable, and researchers will be forced to make public even data which is inconvenient to them and their claims of expertise.

Given the poor quality of much of the research in this area, and the history of inaccurate and potentially misleading claims coming from those who promote GET, I would suggest that patient anecdotes and polling are the most reliable measures of outcome we have, deeply flawed as they are.

I would encourage anyone with CFS to try to look very carefully at the available evidence, rather than just trusting those who claim to be experts.

[1] PACE protocol: http://www.biomedcentral.com/1471-2377/7/6

[2] Initial PACE paper: http://www.thelancet.com/journals/lance ... 2/fulltext

[3] PACE paper on recovery: http://www.meassociation.org.uk/wp-cont ... _Jan13.pdf

[4] Paper on SF36 PF population norms cited by PACE: http://jpubhealth.oxfordjournals.org/co ... 3/255.long

[5] Paper which claims 30-40% recovery rate: http://www.biomedcentral.com/1472-6963/11/217

[6]: FOI request for outcome measures laid out in PACE trial's protocol: https://www.whatdotheyknow.com/request/ ... tes_and_po

Re: GET - useful or risky?

Posted: Wed Aug 14, 2013 4:39 pm
by Bluebottle
The PACE trial researchers have also refused to publish the deterioration rates from their trial.

http://www.stonebird.co.uk/pace/index.html

Re: GET - useful or risky?

Posted: Wed Aug 14, 2013 4:40 pm
by Sustainably Yours
Hi onrecovery
'I'm now walking 16 minutes every day, and have had no adverse effects.'

brilliant, so pleased for you. Yes you need to adjust to your bodies capabilities, and increase carefully. My general adage with my ME that gets me through a lot is, - half everything I plan to do by half, - break it into separate sections and rest between, and lastly, is this something I really need to do or want to do, or some target I have made up that is inappropriate to my health state' - Gets me through!

all the best
----------------------------
onrecovery wrote:The only experience I've had of Graded Exercise Therapy was a friend of mine that under took it. Even though she spoke up at times with regards to her concerns about the programme, she was assured to keep with it. She ended up crashing. I think this type of therapy may be of use, but I do not think the levels of increase are realistic for the sufferer.

I've comprised my own GET. I started out doing a 2 minute walk once a week. Did that for a month, and then in the second month I added a second day in. Then the third month a third day. By the 7th month I was able to walk for 2 minutes every day. I then increased the walk by 2 minutes, firstly on 1 day a week. Then added in another day every subsequent week. I continued adding in 2 minutes in this format. I'm now walking 16 minutes every day, and have had no adverse effects.

From what I've heard GET through the NHS is not broken down into small enough increases.

Just my view anyway !

Re: GET - useful or risky?

Posted: Wed Aug 14, 2013 4:43 pm
by faddy1024
i cant type much as i hardly have the strength to tap into the laptop. i have had ME for 16 years. sudden onset of glandular fever in my second pregnancy then 4 weeks later i said to my partner "the glandular fever has seeped into my muscles,i can hardly move,not knowing what had just happened. i lost everything,eventually my partner couldnt cope so we split ,he had the children as there was no way i could of been a single parent.i really rested then for about 2 years and i was able to go out the house some times or go and watch my son play football etc. my dr was irritated at me as i would not back down.eventually she referred me to a CFS clinic.at the time i had no idea of what was going on.i actually thought these people were tring to help me.it cost me a fortune in taxis as i was too sick to walk to the bus stop and ME patients do not receive hospital transport like any other debilitating illness because the NHS descriminates against us. they do not give us the same treatment like GPs home visits,the odd nice GP will but mine wont and we dont get help getting to appointments.anyway i spent £10 there £10 back every week for 3 months. i started off doing very gentle 2 minute walks then every week increasing it no more than 10 % each week.i did everything i was told. i got sicker and sicker day by day to the point i could hardly stand up.this all happened over a 3 month period.i have been left in this weak lying down constantly,housebound state now for 7 years since this GET.i can no longer watch my boy play football or go to parents evening or some weeks i am so sick i cant tolerate my 16 year old son around me as he is lively and i cant cope. i said i would write much but this has taken me hours and i am so very angry that this dangerous GET is being promoted.if invest in ME and our norwegian friends pull off this ribuximab trail and it succeeds i can promise you that i personally will sue the NHS, Action for ME and irresponsible pages such as these, if any ME sufferer is thinking of doing GET plesae please dont do it.get ready for my solicitors when all this ignorance,neglect,abuse and discrimination is shown up one day and fingers crossed it might be soon. one more thing before i go,please nobody critise me for my spelling.some one on action for ME thought my spelling was a joke on their facebook site(probably a mild fatigue sufferer) my spelling is all over the place since ME and so is my speech. for my facebook brothers and sisters this is jane meeps

Re: GET - useful or risky?

Posted: Wed Aug 14, 2013 5:07 pm
by admin
talkhealth would like to make it clear and ALL questions on this forum have been posted by people genuinely affected by ME / CFS / Fibromyalgia. talkhealth operates this impartial platform for people to talk directly to the medical panel and at no time now or in the future would plant questions in any forum.

Re: GET - useful or risky?

Posted: Wed Aug 14, 2013 6:31 pm
by Sustainably Yours
Hi Faddy1024

I have heard similar from other people as your experience of GET, or just pushy doctors advising you to walk a bit more each day etc (or telling your partner of loved ones that you need to walk about more, get out more, do some exercise - yes behind my back and against medical ethics too!) .......and as I said above, many medical people involved with 'treatment' of people with CFS/ME are fitness fascists and have no concept of how dangerous their physical so called 'cures' or medical therapies' are to people with ME. Worse still, so many say it's in our heads, that mental cures are needed, that we want to be ill etc. It is beyond belief that people who are under a medical ethos can treat us so.

We loose are lives and our loved ones, and we watch the whole damn thing unfold. Be strong and know you are right. Some people can recover some of their lives , or after time start another life with people who can accept us. We can ourselves find ways forward, so often I have told people 'I am fine, I am OK, just as long as I don't move' - but they do not get it!

Often the medical practices we are lead to by the 'medical professionals' make our conditions worse, far worse. I have different experience to yours (I avoided GET by luck) , but medication I was given made we worse and underlying medical conditions that made my ME worse were missed. I had to work through means of finding out what was good and bad for me. Never an apology from the medicos, never once!

I too loose the ability to type, spell, talk and think at times, although over the last 2 years I have managed an improvement.

Strength to you, and know, as a person with ME, you are not alone in our community.
faddy1024 wrote:i cant type much as i hardly have the strength to tap into the laptop. i have had ME for 16 years. sudden onset of glandular fever in my second pregnancy then 4 weeks later i said to my partner "the glandular fever has seeped into my muscles,i can hardly move,not knowing what had just happened. i lost everything,eventually my partner couldnt cope so we split ,he had the children as there was no way i could of been a single parent.i really rested then for about 2 years and i was able to go out the house some times or go and watch my son play football etc. my dr was irritated at me as i would not back down.eventually she referred me to a CFS clinic.at the time i had no idea of what was going on.i actually thought these people were tring to help me.it cost me a fortune in taxis as i was too sick to walk to the bus stop and ME patients do not receive hospital transport like any other debilitating illness because the NHS descriminates against us. they do not give us the same treatment like GPs home visits,the odd nice GP will but mine wont and we dont get help getting to appointments.anyway i spent £10 there £10 back every week for 3 months. i started off doing very gentle 2 minute walks then every week increasing it no more than 10 % each week.i did everything i was told. i got sicker and sicker day by day to the point i could hardly stand up.this all happened over a 3 month period.i have been left in this weak lying down constantly,housebound state now for 7 years since this GET.i can no longer watch my boy play football or go to parents evening or some weeks i am so sick i cant tolerate my 16 year old son around me as he is lively and i cant cope. i said i would write much but this has taken me hours and i am so very angry that this dangerous GET is being promoted.if invest in ME and our norwegian friends pull off this ribuximab trail and it succeeds i can promise you that i personally will sue the NHS, Action for ME and irresponsible pages such as these, if any ME sufferer is thinking of doing GET plesae please dont do it.get ready for my solicitors when all this ignorance,neglect,abuse and discrimination is shown up one day and fingers crossed it might be soon. one more thing before i go,please nobody critise me for my spelling.some one on action for ME thought my spelling was a joke on their facebook site(probably a mild fatigue sufferer) my spelling is all over the place since ME and so is my speech. for my facebook brothers and sisters this is jane meeps

Re: GET - useful or risky?

Posted: Wed Aug 14, 2013 7:12 pm
by faddy1024
no freedom of speech here then.my post got deleted.suprise suprise

Re: GET - useful or risky?

Posted: Thu Aug 15, 2013 1:10 am
by ithought
When the effects for some people of GET can be so harmful why is it ok to sacrifice there health for the small gains gained by the few it can help. It appears that the 'dr do no harm' doesn't apply to GET.