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

[Tom Kindlon]

FWIW

Pacing
Page 143

An example of how pacing appears to be changing at least in UK CFS/ME clinics, into more graded pacing/graded activity/similar

#15: ME moderate before course, became severe after course. Symptoms were very much worse after. Course not appropriate to needs. Part only attended.

“Pacing should not be treated as same as GET. Pacing myself GENTLY helps. The pacing course I received was not gentle.”

 

[Tom Kindlon]

(Not important)

Pacing
Page 144

Somebody mentioning how it can be difficult to implement management programs.

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

“It helped to know that my efforts to pace myself before I saw her had been going in the right direction. It has been difficult to follow all the directions because I have responsibilities and it is impossible to get help. Pacing has helped me to accept that it is better to rest when I have to.”

 

[Tom Kindlon]

(Not important)
Pacing
Page 144

A benefit from pacing

#43: ME moderate before course, remained moderate after course. Symptoms were very much better after. Course appropriate to needs.

“We were taught how to tailor-make our own programme if we wished to and felt that it would be helpful. I was able to VERY gradually come off sleeping tablets as I was sleeping better.”

 

[Tom Kindlon]

(Not important)
Pacing
Page 144

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

“The pacing has been the approach I have tried to use the most but living alone means that it is very hard to do effectively. I do now have help. But my ME has gradually gotten worse over time as I have suffered relapses for different reasons.

The pacing is only an inadequate means of keeping my head above the water and in no way helps make me better. It at best keeps me level. But there are times when I have no choice but to do too much and that does not help.”

 

[Tom Kindlon]

(Not important)
Pacing
Page 144-5

#130: ME moderate before course, became mild after course. Symptoms were somewhat better after. Course partly appropriate to needs.

“I am of the opinion that M.E. was trivialised. It seemed that we were being told that our former lifestyles, stress levels, work ethic (too much work and no relaxation) were the main reasons why we had burned out!

Basically we "gave ourselves the baffling array of symptoms" and only diet, pacing, attitude would "cure us".

Pain levels and loss of our careers meant nothing to the group leaders really and the general consensus of all attendees that "If we didn't want ME then we didn't have to have it" was astonishingly ignorant.

But I did, however, listen carefully to other aspects of the course material and learned the importance of pacing to help alleviate the more distressing and incapacitating symptoms of the fickle malady that is M.E.”

 

[Tom Kindlon]

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Pacing
Page 145

#204: ME moderate before course, remained moderate after course. Symptoms were somewhat better after. Course appropriate to needs.

“Gave me better understanding of ME and how to avoid boom and bust which did improve my symptoms by learning to conserve energy for important things. So I suppose enabling more stability in symptoms.”

 

[Tom Kindlon]

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Pacing
Page 146

#249: ME moderate before course, remained moderate after course. Symptoms were somewhat better after. Course partly appropriate to needs.

“It was part of a whole life readjustment program which was too prescriptive and ultimately unworkable. The pacing element remains helpful to this day.”

 

[Tom Kindlon]

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Pacing
Page 146

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

“It was too short, there should be an opportunity to review changes after say 6 months.”

 

[Tom Kindlon]

(Not important)
Pacing
Page 146

Doing less helped ...

#257: ME moderate before course, remained moderate after course. Symptoms were somewhat better after. Course partly appropriate to needs.

“I felt like it was just common sense to begin with, and it took a while for me to realise that I really must slow down. Only when I started doing less that I felt I could, did I begin to see any benefit - I had energy for longer, and relapses became less. I had been on statins prior to my pacing therapy, which I stopped, and I believe these were the cause of my muscle loss in legs and caused me to limp.”

 

[Tom Kindlon]

Pacing
Page 146

#284: ME moderate before course, became severe after course. Symptoms were somewhat worse after. Course partly appropriate to needs.

“Two hours weekly plus travel time was far too much and made my ME much worse during and immediately after the course, the majority of the course content I could have read from a book or from the internet in a fraction of the time and pacing simply hasn't worked for me.”

 

[Tom Kindlon]

(Not important)
Pacing
Page 146

#308: ME moderate before course, remained moderate after course. Symptoms were somewhat better after. Course appropriate to needs.

“I found pacing a very useful tool that helped manage my illness. My health has got worse since I have let the tools learned slip.”

 

[Tom Kindlon]

(Not important)
Pacing
Page 147

On the realities for many:

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

“Too much focus on delegating because I have no carer or partner to whom I can delegate.”

 

[Tom Kindlon]

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Pacing
Page 147-148

#425: ME moderate before course, remained moderate after course. Symptoms were somewhat better after. Course appropriate to needs.

“The US$30 I spent for this course has been more helpful than anything the NHS has offered me, either through my GP or the specialist ME clinic.”

Sounds like: The CFIDS & Fibromyalgia Self-Help Program website (www.cfidsselfhelp.org) (focuses on pacing)

 

[Tom Kindlon]

(Not important)
Pacing
Page 148

#470: ME mild before course, remained mild after course. Symptoms were the same after. Course partly appropriate to needs. Part only attended. Reason given – it was not working.

“It was too directive and from the OT's perspective rather than around my individual symptoms.”

 

[Tom Kindlon]

(Not important)
Pacing
Page 149

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

“Pacing was the best thing the NHS did for me. I was too ill to attend the clinic though. It was torture going to the clinic and recovering after. I killed myself going because I was so desperate to get well. They should do home visits. If only they understood how terribly I was suffering at that time.”

 

[Tom Kindlon]

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Pacing
Page 149-150

#584: ME mild before course, became moderate after course. Symptoms were somewhat worse after. Course not appropriate to needs. Part only attended. Reason given – it was not working.

“PACE idea is just common sense... weeks spent stating the obvious, do what you can, don't overdo it and rest... but not too much or you get weaker. Had amazingly worked that out all by myself over the course of having ME and managing life!”

 

[Tom Kindlon]

(Not important)
Pacing
Page 150

#600: ME moderate before course, remained moderate after course. Symptoms were the same after. Course partly appropriate to needs. Part only attended. Reason given – it was not working.

“If it has taught me anything it is that I need to heed the warning signs my body gives me and allow myself to rest after periods of activity. If I push myself too hard it will come back to haunt me!”

 

[Tom Kindlon]

(Not important)
Pacing
Page 150

#616: ME moderate before course, remained moderate after course. Symptoms were the same after. Course appropriate to needs. Part only attended.

“It was tailor made for me and is the most effective treatment I have ever had for my ME, it has allowed me to remain positive most of the time and helps me through bad patches. With Pacing I can manage without painkillers some of the time.”

 

[Tom Kindlon]

This shows how pacing on the NHS is sometimes changing and becoming more like graded activity
Pacing
Page 150

“#629: ME mild before course, became moderate after course. Symptoms were somewhat worse after. Course partly appropriate to needs.

Pacing was a mixed bag. It was definitely better than GET, as it taught me to listen to my body and not ignore symptoms and I gradually began to see the link between exercise/activity and delayed fatigue, which I hadn't done beforehand. That was crucial in slowing down my deterioration.

But I wish someone had said 'if you are experiencing symptoms you should rest' – the message was, 'you can get worse briefly but symptoms should then go again'. I kept waiting for them to go and they never did. Then I had a massive relapse which I have not recovered from.

Pacing is not very satisfactory – it is full of confusing contradictory messages 'rest - but bed rest is BAD' (when I had bed rest I actually improved most rapidly), 'increase activity - but not too much' – how much is too much? I felt the emphasis was too heavily on increasing activity – I should have been told to rest.”

 

[Tom Kindlon]

(Not important)
Pacing
Page 150-151

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

“This was the easiest to apply therapy and I liked the sessions. Everything was explained to me and written down for me and all my questions answered.

I was asked to move on and try CBT or GET because I didn't make any real improvement, but I did find elements of it useful and still use it today.

I would go as far as to say that my time spent with the OT had more of a positive effect on my mental state than the CBT course did.”