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

[Tom Kindlon]

I think a lot of patients have a ceiling of activity like this.

ME moderate before GET 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”.
(page 58)

 

[Tom Kindlon]

This shows how pacing is changing:

ME mild before Pacing 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]

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

“I felt it validated my need to rest and made me more aware when I was overdoing things and pushing into the 'danger zone'.”
p.62

 

[Tom Kindlon]

ME very severe before Pacing course, improved to severe after course. Symptoms somewhat better after. Course appropriate to needs.

“Pacing works. My instinct always told me so but the psychobabblers derailed me for years, I needed one short course to confirm what I knew. Pacing works.”

 

[Sean]

Thanks for these, Tom.

They taught us positive mental attitude, so it was impossible to report back the truth without being accused of negativity.

Fraud, exploitation, and intimidation, against some of the sickest and most vulnerable people in society.

How noble & brave.

 

[Sidereal]

ME mild before Pacing 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.”

Sounds like GET in disguise being sold to patients as pacing. As everyone with ME knows, bed rest is by far the most effective intervention for a symptom flare.

 

[Tom Kindlon]

(page 66)

Note: Activity Management Courses

Pacing courses containing elements of GET or CBT

Whilst GET is based on an abnormal behaviour model of causation and is applied in a different way, 13% of respondents attending Pacing courses reported that they contained elements of GET (with no CBT element), and a further 37% reported that their Pacing courses contained elements of both CBT and GET – see also Appendix 2, 3.1c.

This might suggest that some therapists actually delivered Activity Management (or Graded Activity Management) in addition to Pacing.

Example comments:

“We were told to follow our exercise plan daily no matter how we felt.” “I was then instructed to GET OUT of my wheelchair – that what I really needed was exercise.” “It was called Graded Activity Therapy. A baseline was established. In my case 50 steps to be carried out each day for two weeks then, providing there was no significant increase in symptoms, the 50 steps were to be increased by 10% i.e. to 55 steps. Again this to be followed for two weeks with the same criteria until I crashed!”

 

[Tom Kindlon]

(For what it's worth)
(Page 69)

3:7 Effect on Mental Health and ME/CFS Symptoms – CBT

- See Appendix 2, Section 6

CBT courses brought about greater improvements to the symptoms of anxiety, depression and stress than they did on ME/CFS symptoms with a slightly lower number becoming worse:

• Mental health symptoms of 34% of respondents improved compared to a 13% improvement in ME/CFS symptoms following CBT courses

• Mental health symptoms of 18% of respondents became worse compared to a 20% worsening of ME/CFS symptoms following CBT courses

• For those respondents who reported that they did not have any anxiety, depression or stress symptoms before their CBT courses, ME/CFS symptoms improved for only 5% but became worse for 39%

Example comment – CBT:
“The course was helpful in accepting the physical nature of the disease and the lack of effective medical treatment. The course was most helpful in dealing with the depression accompanying the loss of physical and mental abilities.”

 

[Tom Kindlon]

(Page 71)

3:8:2 Effect of Courses on Specific ME/CFS Symptoms – GET

Symptom improvement

Following GET, specific symptom improvements ranged from 6% to 13% irrespective of the listed criteria. The overall percentage of symptoms improving as shown at 3:4:1a and 3:5:2:1 above is 15%.

GET courses which were GET only – no elements of CBT or Pacing – demonstrated specific symptom improvements ranging from 1% to 9%. The overall percentage of symptoms improving as shown at 3:4:2a and 3:5:1:1 above is 12%.

Symptoms becoming worse

Following GET, specific symptoms becoming worse ranged from 32% to 62% irrespective of the listed criteria. The overall percentage of symptoms becoming worse as shown at 3:4:1a and 3:5:2:2 above is 64%.

GET courses which were GET only – no elements of CBT or Pacing – demonstrated that specific symptoms becoming worse ranged from 37% to 72%. The overall percentage of symptoms becoming worse as shown at 3:4:2a and 3:5:2:2 above is 74%.

In both sets of data and as a result of Graded Exercise Therapy: post exertional malaise, exercise-induced muscle fatigue, muscle pain, aching joints without swelling or redness, cognitive dysfunction and sleep disturbance or unrefreshing sleep – became notably worse for the majority of respondents.

 

[Tom Kindlon]

Cognitive Behavioural Therapy & effect on disability benefits (@MEAssociation 2015 survey).
- The disability benefits of 71% of the respondents remained the same after CBT courses
- The disability benefits of 19% started or were increased and 9% were stopped or reduced
- Net increase in benefits of 10%
From page 75 http://www.meassociation.org.uk/2015/05/23959/

 

[Tom Kindlon]

Graded Exercise Therapy & effect on disability benefits (@MEAssociation 2015 survey).
- The disability benefits of 69% of the respondents remained the same after GET courses
- The disability benefits of 22% started or were increased and 9% were stopped or reduced
- Net increase in benefits of 13%
From page 75 http://www.meassociation.org.uk/2015/05/23959/

 

[Tom Kindlon]

Pacing & effect on disability benefits (@MEAssociation 2015 survey).

Pacing:
- The disability benefits of 79% of the respondents remained the same after courses
- The disability benefits of 10% started or were increased and 11% were stopped or reduced
- Net decrease in benefits of 1%

From page 75 http://www.meassociation.org.uk/2015/05/23959/

 

[Tom Kindlon]

Patient with #ME/#CFS describing how doing CBT indirectly caused problems for them.

“...CBT opened the door to people saying I am suffering from severe anxiety and depression which has caused me nothing but massive problems in appealing DLA, and my works pension. I am now in purgatory.”

(page 75, ME Association 2015 survey http://www.meassociation.org.uk/2015/05/23959/ )

 

[Tom Kindlon]

From @MEAssociation 2015 survey describing how disability benefits process negatively affected their health:

“Pacing helps with symptom severity and duration as long as I can stay within my personal limits. Unfortunately two medical assessments and a DLA tribunal pushed me past my physical, mental and emotional limits and it was impossible to pace for the medicals, interviews, travelling etc., and I relapsed dramatically, had to have increased medications and also medications for my mental health which also suffered.

The relapse lasted two and a half years, strict pacing and with the help of the ME Association and the Expert Patients Program has helped me get 'back on track'. Unfortunately my DLA renewal is due, I am having to forego strict pacing also anxiety levels are building and depression deepening (antidepressant dosage increased). I notice a great difference between effective pacing and not being able to stay within my limits, both in symptom severity and also the amount of medications.”

(from ME Associations survey, 2015 p. 75-76 http://www.meassociation.org.uk/2015/05/23959/ )

 

[Tom Kindlon]

(P. 85-6)

4:3 Conclusions – Graded Exercise Therapy (GET)

We conclude that GET should be withdrawn with immediate effect as a primary intervention for everyone with ME/CFS.

One of the main factors that led to patients reporting that GET was inappropriate was the very nature of GET itself, especially when it was used on the basis that there is no underlying physical cause for the symptoms, and that patients are basically ill because of inactivity and deconditioning.

A significant number of patients had been given advice on exercise and activity management that was judged harmful with symptoms having become worse or much worse and leading to relapse. And it is worth noting that despite current NICE recommendations, a significant number of severe-to-very severe patients were recommended GET by practitioners and/or had taken part in GET courses.

The other major factor contributing to poor outcomes was the incorrect belief held by some practitioners that ME/CFS is a psychological condition leading to erroneous advice that exercise could overcome the illness if only patients would ‘push through’ worsening symptoms.

When it comes to prescribing any form of exercise, health professionals should be doing so with the same degree of caution that would apply to a drug intervention. Clearly that does not often happen with GET. A very significant number of patients had been given advice on exercise and activity management that was not appropriate to the extent of their disability and which resulted in harm.

We recognise that it is impossible for all treatments for a disease to be free from side-effects, but if GET was a licensed medication we believe the number of people reporting significant adverse effects would lead to a review of its use by regulatory authorities.

As a physical exercise-based therapy, GET may be of benefit to a sub-group who come under the ME/CFS umbrella and are able to tolerate regular and progressive increases in some form of aerobic activity, irrespective of their symptoms. However, identifying a patient who could come within that sub-group is problematic and not possible at present.

Some patients indicated that they had been on a course which had a gentle approach of graded activity rather than a more robust and structured approach of graded physical exercise. There were some reports that patients were told they should not exercise when they felt too unwell to do so. These led, for some, to an improvement in symptoms or to symptoms remaining unaffected.

However, we conclude that GET, as it is currently being delivered, cannot be regarded as a safe and effective form of treatment for the majority of people with ME/CFS. The fact that many people, including those who consider themselves severely affected, are being referred to specialist services for an intervention that makes them either worse or much worse is clearly unacceptable and in many cases dangerous.

GET should therefore be withdrawn by NICE and from NHS specialist services as a ‘one size fits all’ 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.

The concerns about GET as practiced outside research conditions and consistently expressed in this and other patient surveys are well founded (see Key Findings 3:7 and Appendix 6).

 

[Tom Kindlon]

FWIW: (on CBT) (Page 102)

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

“I felt that the practitioner did not understand how I felt at all and was prejudging me. I ended up arguing with him continuously.”

 

[Tom Kindlon]

Posting as mentions a relapse
(CBT section)
(Page 102)

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

“Initially for a short period the course did improve my mobility. However after several weeks pursuing the GET did result in a significant relapse in my condition, with significant pain, fatigue and constant infections. I did however find that reflecting on the psychological aspects of the course was worthwhile and is helping me to live with my condition. The CBT component of the course emphasised this at the outset and did not promise any potential improvement in pain and fatigue. I believe that there are positive aspects to be taken from CBT in managing the condition and living day to day with M.E. There is however a clear distinction between cure and marginal improvement in one's mental health.”

 

[Tom Kindlon]

FWIW. CBT
Pages 102-103
Shows direct and indirect costs of doing a course:

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

“I did not gain anything from the course of CBT that I received. It was a long way from my home and involved a 2hr round trip (+ hour session) and a day off work for my partner which caused more stress.”

 

[Tom Kindlon]

FWIW. CBT
Page 103
Just mentions some practical problems

#274: 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 too tiring.

“Found the stress of getting to appointments made my symptoms worse. I saw 3 different therapists and had to start from scratch each time. Felt that their emphasis was on the psychological side as that was their 'field' of expertise. It was part of a multi component programme but I just felt no benefit at all.

My employer also made it difficult to arrange as he does not allow time off for appointments so had to take unpaid leave therefore had the extra stress of getting less pay. I had to make the appointments during my working week (4 days = Tues to Fri) as the ME clinic was only open 3 afternoons a week which coincided with my work pattern.

I have however found the only way to conserve my energy is to pace myself, however I feel this is just common sense and don't feel that it deserves to be attributed to a therapy called 'pacing'. Surely everyone does what they feel capable of up to their own individual energy levels.”

 

[Tom Kindlon]

FWIW. CBT
Page 103

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

“I felt that the course dealt with my symptoms as a psychological condition and because of this I felt that there was nothing physically wrong with me. On a positive note I did feel that the pacing element helped slightly.”