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UK: MEA calls for GET & 'false illness beliefs' CBT to be ditched as primary treatments for ME

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Tom Kindlon

Senior Member
Messages
1,734
Page 139
GET
#997:
ME moderate before course, became severe after course. Symptoms very much worse after. Course not appropriate to needs. Part only attended. Reason given – it was not working.

“The course was led by a physiotherapist whom I assumed understood ME. It became apparent as the weeks passed that she had no idea.

We were advised to do as many of each exercise as we could. Before the illness I had always enjoyed exercising and was eager to be able to do this again. I pushed myself to do the exercises, however after each session I became more ill.

I had to take painkillers and go to bed, which continued for a number of days. After a few weeks I knew that the therapy was making me a lot worse. Also being sick was causing problems with my job, so I stopped.

At the end of the therapy everyone was given free membership to a gym. I know from speaking to the group that no one benefitted from the therapy or managed to maintain the exercise programme.”
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T

Tom Kindlon

Senior Member
Messages
1,734
FWIW
GET
Page 139

On the practical difficulties of doing an exercise regime when you have ME/CFS.


#1047: ME moderate before course, remained moderate after course. Symptoms somewhat worse after. Course not appropriate to needs.

“I found the course to be repetitive as Pilates incorporates similar elements to GET based exercise, but is a better work out, as it focuses on building up your core strength.

Although I have always maintained to do these exercises on a regular basis, I’ve never been able to reach a baseline as the fatigue fluctuates too often, without an apparent reason or cause.”
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T

Tom Kindlon

Senior Member
Messages
1,734
FWIW
GET
Page 139


#1070: ME moderate before course, remained moderate after course. Symptoms somewhat worse after. Course not appropriate to needs.

“Actually the physical training just hit my confidence quite badly. The pain was so bad I thought I would never be well again and I didn't want to live anymore.

The CBT element to the course was that I had to think more positively about exercise. It was stupid. It was like telling someone with flu to get out more, that it was all in my head. It was really stupid and it hurt more.”
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T

Tom Kindlon

Senior Member
Messages
1,734
GET
Page 139-140

#1076: ME moderate before course, became severe after course. Symptoms very much worse after. Course not appropriate to needs. Part only attended. Reason given – it was too tiring.

“The increased migraines caused by the GET course meant increased use of painkillers. It affected family relationships as I became increasingly disabled in my day to day life and had to be cared for.

Socially I could not interact or go out as I had become to physically ill. The GET course was very aggressive and at the time I was thirteen years old, the unbelievable chest pain and burning in my legs didn't stop for years.

It is the worst treatment I have received for my condition. Both psychologically demeaning and physically damaging.”
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T

Tom Kindlon

Senior Member
Messages
1,734
FWIW
GET
Page 140


#1129: ME moderate before course, remained moderate after course. Symptoms somewhat worse after. Course partly appropriate to needs.

“Despite it becoming very clear that extra physical activity, even introduced very gently, eventually hits a level when I suddenly got worse, the clinicians would not accept this. I even got myself a pedometer and showed them the rough break point, but they would not accept it.

They could not see that mental activity relating to my work restricted my physical activity. Pacing – noting the amount of physical activity I was undertaking, putting in more activity very gently, walking a few steps more, etc.”
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T

Tom Kindlon

Senior Member
Messages
1,734
GET
Page 140-141


#1160: ME moderate before course, became severe after course. Symptoms very much worse after. Course not appropriate to needs.

“I found the whole course extremely stressful, the physiotherapist had a very poor understanding of ME in general. I became so much sicker after doing it, we felt a lot of pressure during the course to do the exercise they were suggesting.

It was the first and only time I had the POTS type symptoms. It took me a long time to recover. However, again I thought I'd meet my specialist half way and do the course, then there couldn't be the suggestion that if only I'd do the course I'd get better. I have always tried most things suggested by my specialist.

I became pretty much housebound for the following six months after the GET course. I was to be honest dismayed at the way it was handled. Also the physios were quite flippant about the illness in general.

The physiotherapists would say that my muscle weakness was due to deconditioning, although I still had very large muscles. And my muscle weakness pretty much happened overnight after my pneumonia and has never come back.

The pacing was done by using a journal and writing down rest and activity periods in the day. I was already doing this though before I'd started my course.”
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D

Dolphin

Senior Member
Messages
17,567
ScottTriGuy said:
Would someone please, please tell me that the victims of the PACE trial are suing either criminally or civilly...please, please...
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It's not clear if that many people were damaged by the PACE Trial specifically. But certainly in general clinical practice some people have.
 
Esther12

Esther12

Senior Member
Messages
13,774
It's generally very difficult for people to get compensation for medical mistreatment in the UK, certainly compared to the US anyway. I suspect that could be part of the reason for the gung-ho adoption of the biopsychosocial model.
 
Artstu

Artstu

Senior Member
Messages
279
Location
UK
BurnA

BurnA

Senior Member
Messages
2,087
ScottTriGuy said:
Would someone please, please tell me that the victims of the PACE trial are suing either criminally or civilly...please, please...
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Would love to see it happen, the press coverage alone would be invaluabl, apart from the obvious right for justice.
 
ukxmrv

ukxmrv

Senior Member
Messages
4,413
Location
London
ScottTriGuy said:
Would someone please, please tell me that the victims of the PACE trial are suing either criminally or civilly...please, please...
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It would be very hard for them to find a lawyer to represent them. Then if they brought a civil case pressure would be put on them to settle out of court and accept a "gagging clause" settlement.

I'm speaking from personal and family experience here. Hopefully some day a lawyer may pay some attention to us and think it worth their while.
 
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Tom Kindlon

Senior Member
Messages
1,734
GET
Page 142

#1313: ME moderate before course, became severe after course. Symptoms somewhat worse after. Course not appropriate to needs. Part only attended. Reason given – it was too tiring.

“Very damaging to me and has set me right back to before my regular self-pacing (and has induced dizziness and unsteadiness on feet and increased muscle pain).”
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J

John Mac

Senior Member
Messages
321
Location
Liverpool UK
ukxmrv said:
It would be very hard for them to find a lawyer to represent them. Then if they brought a civil case pressure would be put on them to settle out of court and accept a "gagging clause" settlement.

I'm speaking from personal and family experience here. Hopefully some day a lawyer may pay some attention to us and think it worth their while.
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There has already been some interest shown by one lawyer

http://forums.phoenixrising.me/inde...ticle-on-me-cfs-litigation.38261/#post-609947
 
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Tom Kindlon

Senior Member
Messages
1,734
GET
Page 142:


#1334: ME moderate before course, became severe after course. Symptoms somewhat worse after. Course not appropriate to needs.

“Initially the GET did realise some improvement in posture and mobility, however after several weeks, my condition deteriorated significantly becoming virtually housebound spending most of my day in bed in significant pain and with extreme fatigue.”
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T

Tom Kindlon

Senior Member
Messages
1,734
FWIW
GET
Page 142

#1364: ME moderate before course, remained moderate after course. Symptoms the same after. Course not appropriate to needs. Part only attended.

Extract: “I was advised to walk for a certain period of time, for example, whether I felt up to it or not. During any bad period, I felt much much worse after doing as instructed. I continued with it for the duration of the course but my opinion is that if it does work for some people, it ’s not a one-size-fits all.

After discontinuing it, I felt returning to my own regime (listening to my body) brought more positive results. Practising GET made me feel like an invalid, no thanks.”
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T

Tom Kindlon

Senior Member
Messages
1,734
FWIW

Pacing
Page 143
Somebody praising pacing.


#09: ME moderate before course, remained moderate after course. Symptoms were the same after. Course appropriate to needs.

“The course helped me in coming to terms with the illness and the effects it has had on my family/social/work life.”
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