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

[SilverbladeTE]

"low serotonin = depression = SSRI drugs" was just as much bullshit as "stress = ulcers", worse in fact, as SSRIs are incredibly dangerous and harmful drugs, plus some of the bastards as we now know were getting huge bribes for pushing drugs, and THAT has been swept behind the curtains.

 

[JaimeS]

@SilverbladeTE , the idea that all depression is due to low serotonin is laughably simplistic. But not all anti-depressants increase serotonin as their modus operandi.

It's not a secret that pharmaceutical companies bribe docs, albeit with food or trips or vacations that are to promote their latest product, rather than cold, hard cash. I watched a special on it the other day, it's not being hidden. It's absolutely brazen, IMO. You can look up what bribes your doc receives and from whom, here at Dollars for Docs.

While I agree with you that anti-depressants are handed out like candy - and, as many of us can attest here, thrown especially at anyone who has "too many" symptoms - I wouldn't want to deny them to someone who could genuinely benefit from their use.

-J

 

[Mary]

Outstanding! They've produced a report with some strong recommendations for NICE.

http://www.meassociation.org.uk/2015/05/23959/

@Sasha - thanks so much for posting this! But I'm wondering, how much will the Powers That Be listen to a patient advocacy group? Do you know if the ME Association has any clout in the UK?

 

[Sasha]

@Sasha - thanks so much for posting this! But I'm wondering, how much will the Powers That Be listen to a patient advocacy group? Do you know if the ME Association has any clout in the UK?

They do their best, Mary! They even have an indirect voice in parliament (as part of an all-party group on ME). But they're really up against it. The situation in the UK is dire.

Is there anything patients can do to help push this report, @charles shepherd? Are there any plans to shove it up the right noses that you can tell us about?

 

[sarah darwins]

The situation in the UK is dire.

Not sure why, but something about the situation in the UK makes me think of FIFA.

 

[Cheshire]

I haven't read everything. The survey is quite balanced, with testimonies of people helped by CBT or GET.

A few quotes from patients:

At the time I believed in it, but sometime later I realised it was all making me worse. The data they collected was from self-assessment forms, before and after treatment. They taught us positive mental attitude, so it was impossible to report back the truth without being accused of negativity.

p. 50

The time that my OT opposed me getting a walker was the last time I saw her. I felt like she was more worried about me becoming dependant on a walker than the fact that I was bedridden and unable to get out of the house at all. I did get the walker, through my GP, and it did improve my quality of life. I really resent the way she treated me, and am appalled that I put up with it for so long. There was a lot of talk about illness beliefs and deconditioning, and the form of "pacing" that she wanted me to use, was to do the same amount of activity every day, no matter how I felt. I did not feel this was appropriate, as some days I am barely able to get out of bed and go as far as the toilet, and I think trying to do more on those days would be harmful for me

p. 57

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 activit

p. 58

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

p.61

 

[Sidereal]

“I was sent to see a physiotherapist (at Northwick Park & then at Charing Cross). One put me on an exercise bike and forced me to bicycle until I couldn't continue (to establish my "aerobic threshold"). It took me a month to recover, possibly longer (my health deteriorated long term at about this time).”

“Tried GET under the supervision of a physiotherapist who quickly realised it was doing more harm than good so effectively concentrated on Pacing elements – “listen to your body” was her expression which I still follow today some 12 years later.”

“I had to walk increasing distances every day, twice a day – 4 lamp posts and back and increase the speed I did it in each time. It started to cause joint and muscle pain and exhaustion, by the end of a week I couldn't get out of bed.”

 

[Sasha]

The treatment of these poor patients was shameful... shameful...

This should be on prime-time TV.

 

[charles shepherd]

Thanks for all the positive comments that are coming in from both the UK and abroad about our report on CBT, GET and Pacing

I've been working away for a few days and am now doing a quick catch up - so these are just a few immediate comments/thoughts for now:

1 This is the largest and most comprehensive 'patient evidence' report covering ALL aspects of CBT, GET and Pacing - ie efficacy, safety and acceptability - that has ever been produced

2 The report contains both quantitative evidence (ie facts, figures and statistics) and qualitative evidence (ie what people say about their experiences with all three treatments) and we have spent an enormous amout of time in trying to ensure that the evidence we have collected, analysed and reported on has been done in a way that is both objective and statistically sound (which has included an independent statistical analysis). Consequently, this evidence should therefore be accepted by the scientific community as a valid piece of research - but I know it will still be challenged!

3 We want this evidence to be used by people with ME/CFS and their patient support groups in order to to make sure that service provision and management programmes for people with ME/CFS are being planned appropriately and that health professionals across a range of disciplines are using approaches that are going to be helpful to individual patients and will not make people feel worse as a result

4 The report will be sent to range of organisations involved in both services for and management of people with ME/CFS - including NICE, NHS England, Department of Health, Clinical Commissioning Groups, Medical Royal Colleges etc. In relation to NICE and NHS England, it will be used to reinforce our campaign to have the 2007 NICE guideline on ME/CFS revised: http://www.meassociation.org.uk/201...statement-by-the-me-association-10-july-2014/. I will be sending a copy to the Countess of Mar and to the charities on the Forward ME Group to seek their views on how we should use this evidence to get the NICE guideline reviewed. A copy of the summary and the report is also on its way to the British Medical Journal.

5 E-publication of the summary and part 1 of the report means that there can now be a short period of public consultation before a final paper version is signed off in a few weeks time

6 Finally, I would like to thank everyone who has helped to produce this major report - most of whom have added this work to an already very full voluntary workload. In particular I must thank Ba Stafford, former MEA trustee, who has been the driving force behind this report from beginning to end!

Dr Charles Shepherd
Hon Medical Adviser, MEA

 

[JaimeS]

This should be on prime-time TV.

The person who writes, publishes, films a convincing expose on a major network would get the Pulitzer. Shame they can't see the opportunity.

-J

 

[JaimeS]

quantitative evidence (ie facts, figures and statistics) and quantitative evidence

(Second should be qualitative).

-J

 

[charles shepherd]

(Second should be qualitative).

-J

Thanks for spotting my two quantitatives - I've now edited!

 

[user9876]

Thanks for all the positive comments that are coming in from both the UK and abroad about our report on CBT, GET and Pacing

I've been working away for a few days and am now doing a quick catch up - so these are just a few immediate comments/thoughts for now:

I think it is great that the report is so comprehensive showing lots of data.

I also wondered it you were going to submit a shorter paper to a peer reviewed journal or a writing a short article that would be seen by many doctors? It would be great to get the message out in a form that would be read and taken seriously by many GPs.

Also I wonder if it is worth sending copies to clinical commissioning organizations to point out the potential side effects and lack of benefit with treatments they are being asked to fund.

 

[Sasha]

Will press releases be going out for the final report, @charles shepherd? It would be great to really launch this thing so it gets picked up by the media.

 

[Scarecrow]

Also I wonder if it is worth sending copies to clinical commissioning organizations to point out the potential side effects and lack of benefit with treatments they are being asked to fund.

I believe that that Part 2 of the report, still to be released, will include recommendations.

@charles shepherd As well as all the organisations you mentioned in your fourth point, will MEA be preparing a press release when Part 2 is published. It would be good to see this report getting the wider audience it deserves. Not to mention satisfying to see the papers that like to big up PACE reporting patients' actual experiences of these so called treatments.

 

[Scarecrow]

Will press releases be going out for the final report, @charles shepherd? It would be great to really launch this thing so it gets picked up by the media.

Coincidence!

 

[charles shepherd]

I think it is great that the report is so comprehensive showing lots of data.

I also wondered it you were going to submit a shorter paper to a peer reviewed journal or a writing a short article that would be seen by many doctors? It would be great to get the message out in a form that would be read and taken seriously by many GPs.

Also I wonder if it is worth sending copies to clinical commissioning organizations to point out the potential side effects and lack of benefit with treatments they are being asked to fund.

Thanks

Yes, we are considering submitting the results and recommendations as a paper but the next priority is to send out copies of the report to all the organisations I've mentioned in point 4 of my earlier reply, along with the Clinical Commissioning Groups. In fact, I was talking to someone from one of the CCGs about this on Saturday.

 

[Bob]

@charles shepherd, this is a great piece of work; many thanks to you and Ba Stafford, and all the volunteers for the enormous amount of time and effort that has clearly been spent on this. The size of the survey, and its attention to detail, must surely give it some weight, such that it will be difficult to ignore.

If you were able to get something published in a peer reviewed journal that that would also be very helpful in various ways, as many authorities/bodies won't accept evidence unless it's peer reviewed.

Just for your information, and so perhaps you can prepare yourself for such a response to the survey from certain quarters, this is the argument that White has recently used against one of your previous surveys:
http://forums.phoenixrising.me/inde...n-draft-ahrq-review-on-cfs.37774/#post-601689

 

[ukxmrv]

PLEASE let this bring about change! I'm all for speaking one's mind, but - I literally feel like the ME sufferers of the UK need to take this group of psychobabblers to court and present their side. Why hasn't a patient group been formed to sue their a$$es off?

-J

Because few lawyers in the UK will touch issues around PWME. I know because I tried several different approaches and over time - and other patients have as well.

Even on a simple thing and unrelated to a general ME case, like a personal injury claim after an accident few lawyers wanted to even consider representing me and even less doctors / medical experts wanted to write reports for me or appear in court.

The Judicial Review into the NICE Guideline ended in defeat and the patients were badly let down by their lawyers etc

http://news.bbc.co.uk/1/hi/health/7881116.stm

https://www.nice.org.uk/proxy/?sour.../annualreports/annualreport0809/highcourt.jsp

"The High Court ruled in favour of NICE on all grounds brought against the Institute in the judicial review of its clinical guideline on CFS/ME. The judgement, which was made in March 2009, acknowledged the dedication of the guideline development group members in working together to produce the best guideline possible. The result means that the NICE guideline continues to be the gold standard for best practice in managing CFS/ME."

 

[JaimeS]

The result means that the NICE guideline continues to be the gold standard for best practice in managing CFS/ME.

Ugh, @ukxmrv . That's insane.

But that was only two patients. Although it appears that ME sufferers showed up to be supportive, I believe you'd need every sufferer of ME in the UK who could still stay awake for long enough to hire a high-powered lawyer known for crushing his/her opponents under their heel; or perhaps a team of lawyers. Get these people to say what they really think of ME sufferers in public - that they are lazy or raving mad, or that they simply don't "want" to get better - and please let here be someone on a feeding tube in the background when they do.

Bring experts from other countries to testify - claim that being part of the NIH is a conflict of interest in the UK and point out what has happened to other doctors who have supported ME from Britain and legally suppress the testimony of the people who have proposed and supported the plan in the past. Find people to judge the data entirely on its own merits. 80% of US docs believe there is a physiological basis for the illness (even those who also believe it is impacted by stress or depression). Perhaps they can judge the UK's methods, and show the UK that this is not the way that ill people are treated elsewhere. Shame the country in public.

Listen to the lawyer they hired:

Firstly, the people who assessed the guidance were weighted in favour of psychological treatments and, secondly, it was irrational and unfair.

Be clearer, buddy. Why were they weighted in favour of psychological treatments. What did they stand to gain? And 'unfair'? Come on... we can all do better.

-J