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

Messages
2,087
It is horrific. And yet the response from advocates, dr's and patients has been very muted. If there is going to be any change it's going to take courage to stand up to these giant abusive asses to effect change. I'm not saying to be strident and abusive in turn but to not back down not be polite and conciliatory trying to find common ground and bring everyone to a happy middle ground or what ever. I don't think that has been working and I don't think that's going to change anytime soon.

With all the positive things happening the UK seems to be peddling backwards and the abusers seem to be working very hard indeed to keep it that way. Even Julia Newton who does decent research is attached to the NHS through her hospital affiliation and doesn't seem to find CBT/GET to be a problem. Just my observation and thoughts FWIW.

I agree with your thoughts. People who don't speak out and stand up for what is right are complicit - especially now when they can't claim ignorance. It's appalling to read these accounts - how can a modern civilised society allow this to happen.
 

Snowdrop

Rebel without a biscuit
Messages
2,933
By believing that reasonable discourse will always result in a reasonable outcome.

Some people are simply not amenable to reason. You could go on day and night and nothing will change.

That doesn't mean yelling wildly and gesticulating like madmen (not that anyone is doing that --but there are accusations to that effect) but it does mean standing firm and not budging from the facts. The salient facts being that there are a great number of people with an illness that is profoundly debilitating. These people who fall ill come from all walks of life and from a wide diversity of circumstances. They did not cause their illness nor are they perpetuating it. Whatever this illness is however it gets defined the real issue is one of believing the patients account of their experience vs. . .well you all know by now.

There is no need to quibble about what this illness is. Stand up for patients because of the horrific suffering they experience at the loss of quality of life and the abuse they experience at the hands of BPS. We need this from Dr's, researchers and advocates. I know there are people out there who are trying but there is also a lot of not rocking the boat too. Stronger coalitions, more appropriate media coverage, and the necessity of people who think that keeping quiet is an option to 'come out' and be heard by those that would try and silence us all.

I have heard some here speak as if doing this--standing firm and pointing out what is wrong is equivalent to behaving like hysterics.
It's this attitude of playing nice and not rocking the boat and being seen as completely reasonable and civil that is preventing anything from moving forward. There are small positive things that do happen but the overall tone remains deeply embedded in the status quo. While a few individuals may have the means to access alternative care many don't and the numbers are growing and time ticks ever onward.

And some die. . .never having had the chance to fully live. And it gets blamed on the person. When all they want is their health.
 

Snowdrop

Rebel without a biscuit
Messages
2,933
Perhaps because they were never actually that civilised to start with.

Yet appearances beg to differ and that's what matters. They come off as uber civilised, urbane, reasoned, enlightened, snappy dressers, witty, literate, world travelled, with amazing hobbies etc. They see this as putting themselves in a category above others.
Then they paint patients into one of two groups: wild crazy agitators, or placid hopeless people who need to be lead and patronised.
Of course there are exceptions.

I think it's quite honestly delusion and an inability to really relate to people who are not healthy as people and not just as test subject.
They think that their exalted position in society has made them something special and that their good fortune had nothing to do with it it's all down to their hard work.
 

Tom Kindlon

Senior Member
Messages
1,734
FWIW
GET
Page 127


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

“Very rigid, frustrating therapies; very blinkered. I left feeling that it was my fault that it was not working and I could not get up to targets.”
 

Tom Kindlon

Senior Member
Messages
1,734
GET
Page 127

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

Extract: “The Course, which started in September 2008, included Pacing, CBT and GET. I consider that the GET made me significantly more ill than I had been or need have become. Unfortunately, due to the fact that my follow-up appointment did not take place for some while after starting the GET, I persisted with the prescribed walking exercises for about six weeks, despite feeling more and more ill, as I had been told it would take some while for the benefits to take effect.”
 

Tom Kindlon

Senior Member
Messages
1,734
Page 127-8

Person in the PACE Trial who got worse with GET

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

“As it was part of the PACE trial, a strict agenda was adhered to with no deviations. Also, the physio was not allowed to comment on any symptoms I may have had between sessions or as a result of treatment. The course was weekly for 4 weeks, fortnightly for 10 sessions and a last one 3 months later.”
The schedule does sound like the PACE Trial schedule and not one used much in clinical practice.
 

Tom Kindlon

Senior Member
Messages
1,734
FWIW Page 129
(Don't know where this took place)


#84: ME moderate before course, remained moderate after course. Symptoms somewhat worse after. Course not appropriate to needs.

“My GET course was actually called a Fitness for Life programme, and I was told by the therapist that ME was progressive without treatment, which I found very curious when there is no universally agreed treatment. Personally the therapists were full of empathy and I believe they thought they were helping patients but they were poorly informed on all aspects of ME. They seemed to believe a mind over matter approach was a bona fide treatment, regardless of the after-effects.

I also discovered the reports from the course didn't go back to our consulting physicians, and we weren’t informed why and for whom they were being collated.

I was never told it was a GET course, but it was clear this was exactly what is was because all the patients included in the course had either ME or FM.”
 

Tom Kindlon

Senior Member
Messages
1,734
FWIW
GET
Page 144

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

Physio made me feel my symptoms were psychological. Gave me an exercise regime which was unrealistic and made me very ill. Gave up after a few sessions.”
 

Tom Kindlon

Senior Member
Messages
1,734
GET
Page 129


#145: ME moderate before course, became severe after course. Symptoms somewhat worse after. Course not appropriate to needs.

Extract: “I felt that I was pushed too far to do much more than I felt I could, which led to relapse. I also felt bullied and threatened that if I did not comply with GET my insurance payments would be stopped.”
 

Tom Kindlon

Senior Member
Messages
1,734
GET
Page 129

#173: ME mild before course, became moderate after course. Symptoms somewhat worse after. Course not appropriate to needs.

“I found the exercise drained my energy and I deteriorated whilst I continued with it. I improved gradually after I stopped. Told that negative thoughts and beliefs made M.E. worse. Discussed pacing to use limited energy.”
 

Tom Kindlon

Senior Member
Messages
1,734
GET
Page 129-130

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

Extract: “Course offered by Dr X at Y in 2005. Dr Z the therapist, explicitly said that ME was not a physical illness and that GET would keep me out of a wheelchair.

The course itself was over the phone with me being told to use an exercise bike three times daily along with other general movement exercises, with her ringing to check on my progress every week. Course progression was too fast, course practitioner overbearing and didn't listen to my feedback that I was unable to physically tolerate the exercise programme – especially the bike.

Before the course I was able to complete a 40 minute walk with no physical side-effects. After doing GET I could no longer walk for even 5 minutes without extreme breathlessness which lasted for up to three hours at its worst.

I deteriorated so rapidly that my GP gave me an attendant wheelchair as I could no longer walk. Seven years later I still need the wheelchair. GET took away my independence and destroyed my life.”
 

Tom Kindlon

Senior Member
Messages
1,734
GET
Page 130

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

Graduated exercise was the most unhelpful thing I have done and only succeeded in making my symptoms very much worse!
 

Tom Kindlon

Senior Member
Messages
1,734
FWIW
GET
Page 130-131

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

“I was put on the course just after my diagnosis after 8 years of people not believing I had anything other than depression. I was so pleased I had a diagnosis and that people believed me I had the momentum to continue with the therapy for a number of weeks – I was full of hope, adrenaline and belief that they were going to cure me.

After a number of weeks, especially when they introduced the graded exercise I began to get very tired, although I was able to do all the exercises, my home life – housework, visiting friends, amount of time I could stay up all suffered until I was using all me energy walking.

When I was left on my own, I was even worse – the physiotherapist did not understand that I was using all my energy for this alone and I became very upset with her. I do not think she believed me – I think she saw it as an excuse. As far as she was concerned it was supposed to make me more active and improve muscle tone, reduce heart rate etc.

She did not understand that psychologically I had had a 'lift' from someone finally believing me but that my fatigue had now become bad that it had overwhelmed my enthusiasm and the euphoria of finally being believed and getting a diagnosis.

I now use Pacing – which I learnt from a book and it works well most of the time – I do have setbacks and I know what reason they have been caused – excess activity, illness and etc. I still have bouts of good energy but now use them wisely.

Graded Exercise only taught me that I have limited energy and to use it wisely – that was the only benefit. The Psychiatrist offered me CBT but I know that I am not depressed, that what I have is physical and that I have to manage my ME, it no longer manages me.”
 

Tom Kindlon

Senior Member
Messages
1,734
FWIW
GET
Page 131


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

“I was only 13 and was given the exercises by a Physiotherapist at X. Didn't have any understanding of M.E. Six week course of CBT was the main course.

GET was tried as part of the treatment but stopped halfway through because of the reaction I had as a result. School holidays given circuit training. Full relapse.”
 

Tom Kindlon

Senior Member
Messages
1,734
GET
Page 131


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

“It was a terrible, terrible time. I was in more pain, had more problems sleeping, was unable to do anything else each day, felt like my life was over.

My GP had told me it was the only way to get better from ME, so I kept persevering with it but this made me more and more ill and I got very depressed and felt suicidal, because I thought I was never going to feel well again.”