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

[Tom Kindlon]

P179
GET

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

“GET tailor made by neurologist and physiotherapist when Pyridostigmine bromide significantly increased muscle endurance so I could do GET. Effect permanently very bad on health and lifestyle.”

 

[Tom Kindlon]

FWIW
P179
GET

#760. ME severe before course, remained severe after course. Symptoms were somewhat worse after. Course partly appropriate to needs.

"I did not find GET helpful – my symptoms worsened considerably because I was given unrealistic goals and not enough supervision. There was no contact between appointments to discuss setbacks/management. Disappointing.”

 

[Tom Kindlon]

P180
GET

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

“The GET had a very negative effect on my M.E as I could not keep increasing my activity levels at all and this made me very de-moralised and I felt as if I was holding back my recovery.

It made me feel depressed and as if I still wanted to stay ill as I could not do what was being asked of me. It made the M.E much worse when I tried to increase my activity levels and therefore the pain was worse and fatigue etc. It meant I was actually spending more time in bed resting following the increased activity.

I felt that the people doing these courses did not fully understand M.E.”

 

[Tom Kindlon]

Bold bit shows long-term problems


P180
GET

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

“Although I only managed to do GET for a very short period of time (approx. 2 weeks) I deteriorated so rapidly and markedly and my functioning became worse.

Before GET I had been able to build up to walking more for a few weeks for 5 or 10mins sometimes (prior to this walking as much more limited), but after the GET I couldn’t do this and I have been unable to achieve this since, and it is over 2 and half years since I did it.

I would never do it again, now that I understand more about M.E and I know it made me worse, and did harm rather than good (within 2 weeks I was having trouble standing and having funny turns which I had previously had when my M.E was worse).”

 

[Tom Kindlon]

GET
p181

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

“I have gone far worse since receiving GET to the extent I haven’t been out since my last treatment. I have had no follow up treatment and the physio concerned tried to get the X to take over my case, although neurology and psychiatry have said that it is the responsibility of the local 'CFS' team. The 'CFS' team have been refusing services.”

 

[Tom Kindlon]

GET
p181

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

“Increased the severity of my symptoms significantly. Was made to feel the symptoms were psychological, not trying etc. A traumatic experience for me.”

 

[Tom Kindlon]

GET
p182

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

“Instead of my muscle function getting stronger the more I exercised the weaker they became. The physio realised this and stopped the sessions.”

 

[Tom Kindlon]

GET
p.182

#1015: ME severe before course, became very severe after course. Symptoms were somewhat worse after. Course not appropriate to needs. Part only attended.

“Truly, I think that this is DANGEROUS. Increased physical activity was a primary factor in my ME becoming so severe, and a year and a half later, I have still not recovered anywhere near to my prior level of functioning. There is a huge difference in the kinds of symptoms that show up as the result of deconditioning and those that come on from overexertion by someone with ME. I don't know how anyone could possibly mistake them.”

 

[Effi]

P179
GET

“GET tailor made by neurologist and physiotherapist when Pyridostigmine bromide significantly increased muscle endurance so I could do GET. Effect permanently very bad on health and lifestyle.”

@Tom Kindlon Did I understand this correctly, that this patient got medication prescribed especially in order to be able to endure GET?

 

[Tom Kindlon]

@Tom Kindlon Did I understand this correctly, that this patient got medication prescribed especially in order to be able to endure GET?

That is all the information I have. Seems a reasonable interpretation of what is written.

 

[ithought]

I have managed my illness for 30 years without becoming bed bound until I was refered To the local 'CFS clinic' I have left the house once this year other than for hospital and that was in a wheelchair. I can no longer weight bare and my current physio's don't think I will ever walk again.. Thanks to the 'CFS clinic' I never agreed to GET but the 'CFS' Physio insisted she knew my body better than I did....

 

[Tom Kindlon]

FWIW
P183
GET

#1168: ME severe before course, became very severe after course. Symptoms were very much worse after. Course not appropriate to needs. Part only attended. Reason given – it was not working.

“Being told to gradually increase my exercise made me push myself more and more and each day I would get worse and worse. Instead on days when I was able I would do what I could but on other days I learned to push myself just made me feel more and more ill.”

 

[Tom Kindlon]

GET
P.183

#1263: ME severe before course, became very severe after course. Symptoms were very much worse after. Course not appropriate to needs.

“Useless, offensive, insulting, patronizing. Had to increase sleeping pills to actually sleep. Increased pain. Permanent deterioration and new symptoms. Almost no cognitive issues before GET, significantly worse. Continued to decline for 3 years following trying to implement GET programme until completely bedbound and only able to eat liquid food, needing an eye mask in a dark room as any small amount of light (e.g. for standby lights) would send body to fits/jerks."

 

[Tom Kindlon]

GET
P.183-4

#1293: ME severe before course, became very severe after course. Symptoms were very much worse after. Course not appropriate to needs. Part only attended.

“This was the worst so called treatment I have ever taken part in. After my initial assessment my condition worsened, so I was unable to get to the hospital and everything was done over the phone.

I was physically unable to get out of bed without help and could not do what was asked of me, so it just ended up with the therapist shouting at me so much each time I ended up in tears. It was unbelievable for a good hospital like X.

Up until then the service from them had been brilliant, but this Therapist said if I did not start 'cooperating' – her words – I would be thrown out of the clinic. She did not seem to realise it wasn't that I didn't want to do what she was asking, I just couldn't physically do it.

After a couple of months I got the letter I had been dreading. She had got me thrown out of the clinic.”

 

[Tom Kindlon]

Pacing
p189

#843: ME severe before course, remained severe after course. Symptoms the same after. Course not appropriate to needs.

Extract: “The course I attended made absolutely no difference to my illness other than leaving me feeling (for the first time ever!), that ME is caused by 'expecting' to feel exhausted/in pain/ etc and that by setting 'goals', pacing, etc. I would eventually get better and be able to return to work. Frankly I found this offensive.”

 

[Tom Kindlon]

Pacing
P192

#1319: ME severe before course, remained severe after course. Symptoms somewhat better after. Course appropriate to needs.

Extract: “The one-on-one session with the OHT included very minimal CBT – just about staying positive – just as I would expect for any other physical condition such as MS. Pacing works better without 'full on' CBT (belief of psychological causation and cure) since its key element is acknowledging your body's limitations and working within it to allow healing to occur if possible – and this HEALING is stated as the causation of cure.

This is empowering and gives permission of the ME sufferer to do what their body is telling them. Add 'full on' CBT and this balance is destroyed, risking negative spiralling into physical and psychological damage as the person is encouraged to work against themselves.

The psychologist-led multi-disciplinary course used Pacing as a foil to deceitfully foist full CBT and GET upon us once our guard had been dropped.

The true Pacing course was immensely beneficial (though not curative for me) and returned my dignity and self-esteem which had been stripped by the years of incompetent CBT forced upon me by the misdiagnosis of depression. It was also the antidote to the years of damaging pushing I'd been encouraged to do as my 'cure' for the non-existent depression.”

 

[Tom Kindlon]

Not from the report but I thought this was as good a place as any to post this.

https://twitter.com/i/web/status/799417630255890433

 

[Tom Kindlon]

https://twitter.com/i/web/status/833052176691949572

 

[Valentijn]

Seriously. "I see you have Chronic Fatigue Syndrome. Why hasn't it gone away on its own or been cured by CBT yet?!?"

 

[Barry53]

I was physically unable to get out of bed without help and could not do what was asked of me, so it just ended up with the therapist shouting at me so much each time I ended up in tears. It was unbelievable for a good hospital like X.

Therapist? Bullying aerosol more like.

After a couple of months I got the letter I had been dreading. She had got me thrown out of the clinic.

And hey ho, another saving for the state. No need to pay any state benefits, nor provide further 'treatment, given the patient was so terribly unwilling to help themselves. Self fulfilling patient-abuse cycle.

I wonder if any of these supposed therapists realise they are actually part of such institutional abuse? If they did, then surely some of them would care ... surely?