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

[Tom Kindlon]

FWIW
CBT
P173

#1405: ME severe before course, remained severe after course. Symptoms were somewhat worse after. Course not appropriate to needs. Part only attended. Reason given – it was too tiring.

“There were 4 therapists: ergonomics, relaxation, physical, and psychological. They started off pretending they believed ME was a physical disorder then gradually switched to an obviously psychologically-grounded approach. I doubt I'll ever trust a psychologist again. Opposing the idiocy of the therapists together has strengthened my relationship with my fiancé.”

 

[Tom Kindlon]

FWIW = For what it's worth (means I don't think it's as exciting as some of them)
GET
P174-175

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

“I felt that my illness was not taken sufficiently seriously by the practitioner. During long periods my increase of activity was accompanied by deteriorating symptoms, which did not concern her at all. During periods where I slowed the pace of increase, due to pressure from the symptoms, was met with resistance from her and if I refused to do as I was told, because such things had gone wrong before or were bringing up symptoms which caused a relapse, I was greeted with tuts and pulled faces.

In the end, I had greatly increased levels of activity, but my symptoms were much the same, with increased pain, and I was not able to do a wider range of activity, with some very simple lifting having become too painful to do.

I was blamed for my lack of progress, told I refused to do things to spite the practitioner and told I 'wasn't motivated to recover'.

To add some balance, I found it useful to find equilibrium or activity and rest where I could then increase activity from, which I had often been over-ambitious about before, and I took this into my later pacing programme.

However, it would have been far better to have found a level of increase that I could do without making things worse.

What was most surprising and alarming about the practitioner was that, despite her supposed experience, she clearly didn't understand the concept of being severely affected and had never seen anyone who had to stay in bed most of the time.”

 

[Tom Kindlon]

FWIW
GET
p175

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

“Felt that the GET therapists were not at all understanding they tried to push too hard. They made us do circuit training in a gym, I could barely cope with the warm up and collapsed during the main exercise. The next week they wanted me to do more.

I was asked to leave the course after 3 weeks because they said my objectives did not fit with theirs. I was on a phased return to work, increasing every week and this was vitally important to me.

The GET therapists insisted I had to add social activities to my plan, but I could not cope with any extra activity in addition to that at work. The GET therapists would not accept this and asked me to leave.

I found out through the local support group later that the person in charge of the program was conducting research and it seems likely that I would have produced unfavourable results if I had continued.”

 

[Tom Kindlon]

GET
p176

#138: ME severe before course, became very severe after course. Symptoms were very much worse after. Course not appropriate to needs.
GET caused me to relapse into an extreme state, in the hospital. They would wait a few days if I was totally bed ridden then start again, causing me to relapse, and so on. When I permanently relapsed they accused me of sabotaging the programme of recovery for ME patients. If I didn't increase enough, they said I wasn't trying hard enough and would be discharged. Thus making me increase more, and relapse. A level of static activity, was not permitted. You HAD to increase.

GET has permanently worsened my mental health due to these experiences.”

https://twitter.com/i/web/status/681978926806204416

 

[snowathlete]

This stuff is haunting to read. Someone outside the ME world needs to give this exposure.

 

[Invisible Woman]

This stuff is haunting to read. Someone outside the ME world needs to give this exposure.

I agree.

A relative of mine worked at a secure mental health facility in the UK many decades ago. She said that she'd been down in the basement of the hospital and there were still shackles sets into the walls where they used to chain people up. I was horrified but, as I read some of this extracts, it's not looking so bad.

What sort of human being, let alone "therapist", thinks it's okay to leave someone feeling suicidal when they are done? If you can't cure 'em take away their self confidence and self esteem. To make it worse these are the trained psychs & counsellors.....they must know the damage that they are inflicting.

 

[Snowdrop]

I find myself wondering about this periodically (healthy ppl's response to severe illness).
It's almost like a fear of compassion. Afraid to be vulnerable to feelings of empathy and compassion that arise causes the antithetical reaction of abuse giving relief to the person experiencing the build up of strong emotion that they are uncomfortable with.

It depends what kind of person you are which way you go with the emotions ie which you feel more comfortable expressing.
I's like to see some psych research take up that as a subject to explore.

 

[soti]

These are shocking.

They started off pretending they believed ME was a physical disorder then gradually switched to an obviously psychologically-grounded approach.

This idea runs throughout the patient reports. I wonder how it relates to the BPS crowd's insistence even to non-patients that they are taking the physical evidence seriously. In both cases I have trouble understanding how they are believing what seems to be contradictory ideas, unless there is bad faith and they really don't believe what they are saying. In any case there seems to be bad faith with the patients. It all stinks.

 

[Tom Kindlon]

Just came across this:

 

[Valentijn]

FWIW
CBT
P173

#1405: ME severe before course, remained severe after course. Symptoms were somewhat worse after. Course not appropriate to needs. Part only attended. Reason given – it was too tiring.

“There were 4 therapists: ergonomics, relaxation, physical, and psychological. They started off pretending they believed ME was a physical disorder then gradually switched to an obviously psychologically-grounded approach. I doubt I'll ever trust a psychologist again. Opposing the idiocy of the therapists together has strengthened my relationship with my fiancé.”

I'm pretty sure that one is mine

 

[worldbackwards]

FWIW = For what it's worth (means I don't think it's as exciting as some of them)
GET
P174-175

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

“I felt that my illness was not taken sufficiently seriously by the practitioner. During long periods my increase of activity was accompanied by deteriorating symptoms, which did not concern her at all. During periods where I slowed the pace of increase, due to pressure from the symptoms, was met with resistance from her and if I refused to do as I was told, because such things had gone wrong before or were bringing up symptoms which caused a relapse, I was greeted with tuts and pulled faces.

In the end, I had greatly increased levels of activity, but my symptoms were much the same, with increased pain, and I was not able to do a wider range of activity, with some very simple lifting having become too painful to do.

I was blamed for my lack of progress, told I refused to do things to spite the practitioner and told I 'wasn't motivated to recover'.

To add some balance, I found it useful to find equilibrium or activity and rest where I could then increase activity from, which I had often been over-ambitious about before, and I took this into my later pacing programme.

However, it would have been far better to have found a level of increase that I could do without making things worse.

What was most surprising and alarming about the practitioner was that, despite her supposed experience, she clearly didn't understand the concept of being severely affected and had never seen anyone who had to stay in bed most of the time.”

Yeah, this is mine. I should clarify that increases in activity weren't anything sparkling, just reading on a stand and playing guitar very slowly; certainly nothing useful, and I had to cut half of it out again when I crashed badly at the end. Which I took ages to do as I'd got into a whole 'must do more' mindset with it and made things worse than they needed to be.

"Very simple lifting having become too painful to do" basically refers to thick paperbacks and the like. Doesn't really bear thinking about now. Had absolutely nothing to say on managing difficult symptoms, which is why I got involved to start with. A fucking shambles and a nasty piece of work to boot.

 

[Tom Kindlon]

FWIW
P176
GET

#140: ME severe before course, remained severe after course. Symptoms were very much worse after. Course not appropriate to needs. Part only attended. Reason given – I did not like the course.

“Lack of honesty about the government's back to work agenda. I have a big problem with them treating everyone with the umbrella term of CFS as the same. Some people have motivation, anxiety/depression issues and not genuine ME.

For some of them, a rigid exercise and activity based programme is good for them, but not for me where any increased activity results in exacerbation of viral infections and muscle weakness, loss of production in energy and cognitive dysfunction.

Telling everybody that they can recover by applying this treatment is very distressing as it denies the very nature of the disease and the limitations and symptom severity.

I felt that the therapists were not acknowledging and listening to the patients but believed everything the official line said in their agenda driven training programmes.”

Note: It was confirmed that this response relates to a question about GET courses, despite the reference to CFS.

 

[Tom Kindlon]

FWIW
P176
GET

#178: 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.

“Patronising, insulting and harmful. I showed evidence that GET deconditioning wasn’t a factor neither low motivation and was asked to leave I was told GET would cure me and I’d be back at work in less than a year. If only.”

 

[Tom Kindlon]

FWIW
P177
GET

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

“The course leaders were not open and honest in their belief that ME is a psychological illness. I felt they were trying to trick us into doing the GET and CBT elements.”

 

[Tom Kindlon]

P177
GET

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

“I was not listened to. I was considered "in denial" and too ashamed to admit my psychological problems. They wanted to stop my medication, but my GP carried on. I was told my behaviour was "entrenched" because I could not increase how far I could walk. My DLA mobility was stopped as they said I had a psychological illness. My life fell to pieces.”

 

[Seven7]

This is sooo priceless, How can we publish where it can be read and follow for all those people that are questioning the release of the data.

 

[Tom Kindlon]

FWIW
P177
GET

#296: 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.

“I was so excited at being told to exercise on an exercise bike, I'd owned one before and loved it. The physiotherapist was so positive about GET and I really wanted it to work.

After one session near the end of the course I saw my GP immediately after the session and I was so ill he sent me straight to hospital.

There were 10 of us on the course although we were seen individually. 8 people dropped out before me and only one finished the course. The physiotherapist rated the course a success as those of us who dropped out, because we were so ill, he said "didn't want to get better".

I tried GET again at X but after some very light exercise the physiotherapist there said I was far too ill to exercise and told me if I improve I can walk to the garden gate and back.

Glutton for punishment and so desperate to do SOMETHING to make myself better I tried again at X but immediately became very ill so stopped. I now refuse point-blank to try GET in any shape or form.”

 

[Tom Kindlon]

FWIW
P178
GET

#463: ME severe before course, remained severe after course. Symptoms were somewhat worse after. Course not appropriate to needs.

“The assumption was that I would improve and any impediment to improvement lay within my own psychological attitude to my illness and not to problems with the method or the severity of my illness. I was blamed for not improving at all. I was told I was not 'engaging in recovery' when I asked if I could focus on pacing only, as pacing helped but the GET was making me worse. I was not listened to.

 

[Tom Kindlon]

P178-9
GET

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

“I was originally confident of doing the course but it was very obvious that the graded exercises were making my condition worse. I felt that, when talking on the arranged telephone interviews that I had to think past the systems, and because I had been a very competitive and active person pre ME, I should be able to press forward.

After 6 months of me trying this daily I was obviously becoming worse, but the practitioner, wasn't happy with me. I put a report in with the paperwork saying the same. This wasn’t a good therapy with my condition, and feel it contributed to me becoming long term disabled as I should have rested as and when in the early days of becoming ill.

I should have listened to a physio-therapist friend of mine, right at the beginning of my illness who recommended I rest my body and not put any pressure on it with exercise. This lady was right.

Also the practitioner, basically said, that I should put myself first and not my young family. This was practically impossible being a single mother of 5 – 4 living with me.

During the same time as doing this course, I sourced types of medication that I took with the support of my own GP, which helped a great deal, along with pacing every part of my physical and mental day, to which I still do to this day.”

 

[Tom Kindlon]

Not very surprising that this program didn't work.

FWIW
P179
GET

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

“My GET was provided by a physiotherapist while I was an inpatient at St. Mary's Hospital, Paddington. It involved daily sessions, with the physiotherapist attempting to double my activity levels at each session; after two weeks of this treatment I could barely move and was discharged.”