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

[Tom Kindlon]

Page 7

GET should therefore be withdrawn by NICE and from NHS specialist services as a recommended treatment with immediate effect for everyone who has a diagnosis of ME/CFS. This advice should remain until there are reliable methods for determining which people who come under the ME/CFS umbrella are likely to find that GET is a safe and effective form of management.

 

[Tom Kindlon]

 

[Tom Kindlon]

 

[Tom Kindlon]

 

[Tom Kindlon]

In total only 7 respondents felt so much better that they considered themselves well: 2 (0.4%) following a CBT course, 2 (0.9%) following a GET course and 3 (1.3%) following a Pacing course.

(Although a proviso would be that some others might no longer follow ME matters and so know about the survey).

 

[Tom Kindlon]

Not on the therapies but it gives some info on symptoms patients suffer from:

Percentage of Respondents Experiencing Specific ME/CFS Symptoms Before Courses Began:

 

[Tom Kindlon]

Peter White sometimes tries to claim that GET doesn't cause problems if done under an ME/CFS specialist.
The data from 2015 ME Association ME/CFS ‬survey report says otherwise:

 

[Tom Kindlon]

From the ME Association (2015) survey:

For: Courses held by Therapists who believed that ME/CFS is a Physical Illness
Outcome: Overall, how were your ME-CFS symptoms after the course compared to how they were before
More info at: http://www.meassociation.org.uk/2015/05/23959/

 

[Tom Kindlon]

 

[Tom Kindlon]

From the ME Association (2015) survey:

For: Courses held by Therapists who believed that ME/CFS is a Mixture of a Physical and a Psychological Illness
Outcome: Overall, how were your ME-CFS symptoms after the course compared to how they were before
More info at: http://www.meassociation.org.uk/2015/05/23959/

 

[Tom Kindlon]

From the ME Association (2015) survey:

For: Courses held by Therapists who believed that ME/CFS is a Psychological Illness
Outcome: Overall, how were your ME-CFS symptoms after the course compared to how they were before
More info at:http://www.meassociation.org.uk/2015/05/23959/

 

[Tom Kindlon]

From the ME Association (2015) survey:

For: Courses held by Therapists who believed that ME/CFS is a Psychological Illness

Outcome: On balance, would you say that the course was appropriate to your needs?

More info at: http://www.meassociation.org.uk/2015/05/23959/

 

[Tom Kindlon]

Post CBT:

0.4% said they felt so much better that they considered themselves well

(page 43)

Compare this to PACE Trial when 21%/22% claimed to have recovered with the very loose definition used
(unfortunately the 0.4% figure could be biased as people who considered themselves well may not have been aware of the survey)

 

[Tom Kindlon]

An example of CBT causing harm
(p.45)

ME moderate before CBT course, became very severe after course. Symptoms were very much worse after. Course not appropriate to needs.

“The practitioner of the course seemed to think that all of my symptoms were largely psychological in nature, and really refused to listen to what I was telling her about how certain symptoms had developed and the physical nature of the illness. This made family members think that my illness was psychological because the practitioner was to them a specialist in M.E and therefore couldn't be wrong. I'm afraid the practitioner was highly ignorant of the illness confounded by her ignoring almost everything I was telling her about what I was experiencing.”

 

[Tom Kindlon]

Somebody not happy with their CBT course.

ME moderate before CBT course, remained moderate after course. Symptoms were the same after. Course not appropriate to needs.

“There was no real understanding of my condition particularly post exertion malaise. They encouraged us to do more and when we said we couldn't they didn't really believe us. The course overall did nothing for me and just left me depressed afterwards when I realised that my physical illness was not really being taken seriously, and since there was nothing after this, and this didn't help, I felt cut off with little chance of any improvement.”

From p.48 http://www.meassociation.org.uk/2015/05/23959/

 

[Tom Kindlon]

(p.50)

ME moderate before CBT course, became severe after course.

Symptoms were somewhat worse after. Course partly appropriate to needs. “At the time I believed in it, but sometime later I realised it was all making me worse. The data they collected was from self-assessment forms, before and after treatment. They taught us positive mental attitude, so it was impossible to report back the truth without being accused of negativity.”

 

[Tom Kindlon]

Post GET:

1.3% said they felt so much better that they considered themselves well

Post CBT:

0.4% said they felt so much better that they considered themselves well

(page 43)

Compare this to PACE Trial when 21%/22% claimed to have recovered with the very loose definition used
(unfortunately the 0.4% figure could be biased as people who considered themselves well may not have been aware of the survey)

 

[Tom Kindlon]

Example of a Graded Exercise Therapy course causing major harm.

ME mild before GET course, became very severe after course. Symptoms very much worse after. Course not appropriate to needs.

“GET is dangerous and has completely ruined my life, I do not see any other illness offered GET. I am not an idiot and as an advanced personal trainer if you were depressed GET would help you for CFS. But not for ME as like when you have a virus and train in the gym it will make you worse. If I had the knowledge about ME when I first got it I would never have done it. Someone should be held accountable for destroying my life and thousands of others I am in constant pain on pain killers to 'try' to help but to no avail as I am not offered any proper medications or treatment for ME as no doctor knows enough about it. You had to have GET no matter how you felt, told you to pace yourself after doing something and rest in between Told me to have a part of the day to lay in silence, could not understand severe ME and how I do that most of the day to cope with this damn illness.”

 

[Tom Kindlon]

No major change in health here but thought it was at least a little interesting

ME moderate before GET course, remained moderate after course. Symptoms the same after. Course partly appropriate to needs.

“During the GET course I had to increase my use of painkillers to deal with post-exertional pain. The course was partly successful as I became a lot fitter - i.e. slimmer, better breathing, less food cravings - but I was just spending my time walking and resting, even after several months of keeping to the regime, so I had to sacrifice my already minimal social life and other hobbies such as art. My illness comes in 'flares' when I am bed-bound for several days, and take a few weeks to recuperate from. These knock me back to square one physically so I have to build up the activity again afterwards, so there is no real possibility of GET having a long-term effect. Having said that, I was already using my own version of GET to up my activity levels in the period after a flare - I have always known of the risks of deconditioning.”
(page 54)

 

[Tom Kindlon]

We're not given much information about the course. Looks like it also involved a form of pacing though not the form many would recommend. Anyway the patient classified it as a GET course.

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

“The time that my OT opposed me getting a walker was the last time I saw her. I felt like she was more worried about me becoming dependant on a walker than the fact that I was bedridden and unable to get out of the house at all. I did get the walker, through my GP, and it did improve my quality of life. I really resent the way she treated me, and am appalled that I put up with it for so long. There was a lot of talk about illness beliefs and deconditioning, and the form of "pacing" that she wanted me to use, was to do the same amount of activity every day, no matter how I felt. I did not feel this was appropriate, as some days I am barely able to get out of bed and go as far as the toilet, and I think trying to do more on those days would be harmful for me”.