Petition: Opposing MEGA

[batteredoldbook]

Give the guy a bit of breathing space! This article is a huge step forward, and if it meets with a positive response Private Eye might notice and do something about PACE.

I know what you're saying. It's just that doctors' breathing space comes out of patients' time. Our lives have been consumed not just by disease, but by stigma and mistreatment. Every day we're left like this is an affront to medicine and a cruel burden to patients. I'm happy to see genuine progress with M.D's column but Pace is what Private Eye is there for. It's really odd not to see it even referenced in passing.

 

[lilpink]

I'm afraid I just no longer 'trust him as a doctor'.

Nor I.

 

[batteredoldbook]

Phil Hammond was that he was working at the CFS service. He has had a few tweets in response to his interview with Esther Crawley, and I would view this article in the context of damaging limitation (to his professional reputation and media popularity) and I don't blame him, I'm afraid I just no longer 'trust him as a doctor'.

I think he could be getting the idea and, given support, could help. But then, I think this about everyone. Hope springs eternal. If you're reading Phil, happy to meet in London any time.

 

[Barry53]

In the context of this thread being on the Opposing MEGA petition, and seeing how it's all been playing out in recent years, I see the article as entirely consistent with the move to appearing to embrace the biological aspects of the illness (edit - in the biopsychosocial model).

I can see this could be a possibility, but even if this is the case, it is actually still a big positive - maybe even more so. By and large the article predominantly (better than 99% I would say) decries the BPS claims, and so very clearly contradicts what EC et al claim, even given their recent biomedical simpering. If it really were an EC inspired attempt to make the BPS crew sound more biomedical, it would actually just be showing them to be completely wrong, and shoot themselves in the foot.

I do not think it is that. Instead I think it may be Dr Hammond himself rapidly divesting himself of the BPS shroud. Whatever way it is, I think it is positive. And if Private Eye has seen fit to publish this, that is very encouraging indeed. PE has a strong track record of not being afraid to stand up against the establishment view, and it looks like they just might have dipped their toe in the water here. I think we should give this some space, and see what develops.

 

[Barry53]

This is actually a really clever bit of typically PE wicked humour:-

Reminds of a joke that used to do the rounds when I was young, alleging an Australian brand of "personal polish":-

Knacker Lacquer - adds a lustre to your cluster.​

This title is a droll message in itself.

 

[batteredoldbook]

I am not happy about Prof. Holgate's response to the mrspoonseeker MEGA trial email at all. I think it was a high quality message and its criticism of Professor Crawley in particular deserved, but did not receive, acknowledgement.
https://spoonseeker.com/2016/11/24/reply-from-professor-holgate/ "Do I feel heard? No. What about you?"

This morning I've emailed Tony Britton, Neil Riley & Dr Charles Shepherd at the ME Association to draw their attention to my question (above). http://forums.phoenixrising.me/index.php?threads/petition-opposing-mega.47466/page-70#post-788915

Respect is the fundamental requirement here in ME-land. I will not give it up even for the promise of the biological research we so dearly need.

 

[Jo Best]

I can see this could be a possibility, but even if this is the case, it is actually still a big positive - maybe even more so. By and large the article predominantly (better than 99% I would say) decries the BPS claims, and so very clearly contradicts what EC et al claim, even given their recent biomedical simpering. If it really were an EC inspired attempt to make the BPS crew sound more biomedical, it would actually just be showing them to be completely wrong, and shoot themselves in the foot.

I do not think it is that. Instead I think it may be Dr Hammond himself rapidly divesting himself of the BPS shroud. Whatever way it is, I think it is positive. And if Private Eye has seen fit to publish this, that is very encouraging indeed. PE has a strong track record of not being afraid to stand up against the establishment view, and it looks like they just might have dipped their toe in the water here. I think we should give this some space, and see what develops.

Hi Barry, I didn't mean to imply that this article was inspired by Esther Crawley, I give Phil Hammond credit for being sufficiently smart, self-confident, experienced, and media savvy to decide for himself what to publish under his name. You could be right that he wants to distance from the BPS model and I hope so (I'm the eternal optimist and have a very positive outlook on life and about motives and so on) but I don't see the article as being in any way anti-establishment. The establishment view of ME/CFS currently is that psychological problems (such as phobias) and trauma (including childhood abuse) and lifestyle choices (e.g. bad sleeping or eating habits) affect the patient's biology (that's all reasonable) and that, in turn, psycho-behavioural therapies, such as CBT delivered over the internet, can treat the biological abnormalities -

“Crawley believes that CFS is a biological illness and that online CBT can be used to alter the young person’s biology.” The Times, 2nd November 2016.

No sensible doctor would claim that any single treatment is effective in all cases of any disease, so I don't see Phil Hammond as saying anything that could be construed as contradicting his colleague Esther Crawley. (I'm not trying to disagree with you by the way, as I hope you are right, I'm just airing what I see from my own perspective).

 

[Dx Revision Watch]

This morning the "OMEGA" petition stands at just under 2,950. Can we make it 3000 or more by the weekend?

https://www.change.org/p/opposing-mega-a-vote-of-no-confidence-in-mega-research-for-me-cfs

If you haven't already signed, please sign today.

 

[batteredoldbook]

This morning I've emailed Tony Britton, Neil Riley & Dr Charles Shepherd at the ME Association to draw their attention to my question (above). http://forums.phoenixrising.me/index.php?threads/petition-opposing-mega.47466/page-70#post-788915

Two lightning fast replies from MEA this morning. Goodness they do get the social side of M.E just right.
Am told Dr Shepherd. will return early next week. #pwme

 

[batteredoldbook]

The establishment view of ME/CFS currently is that psychological problems (such as phobias) and trauma (including childhood abuse) and lifestyle choices (e.g. bad sleeping or eating habits) affect the patient's biology (that's all reasonable)

The key to all of this is the simple understanding that where we run the scientific method backwards, we end up reversing cause and effect in our conclusions.

It is the illness and pain from M.E that causes my sleep to be interrupted. It's not the other way around!
I take painkillers, I sleep better.

I've lived much of my life indoors ...because I was too ill to get out! ME didn't magically develop as a result of some insular lifestyle choice that I made!
I was planing to become a doctor not a hermit!

I have to rest after exertion because I'm ill with M.E, it's not a question of sloth leading to illness.
I was fit before I got ill.

And so the list of reversals goes on. Only when the methodology is corrected will we start to produce useful information as opposed to disinformation about M.E. This is what makes it so important to challenge MEGA now *at the outset*. If they run the science the wrong way around, they'll produce £10M worth of disinformation - ALL of which People with M.E will have to work to counteract before they can start to make real progress. So it was with PACE so it will be again if we do not act now.

@batteredoldbook
13:04 25/11/2016

 

[Barry53]

Hi Barry, I didn't mean to imply that this article was inspired by Esther Crawley, I give Phil Hammond credit for being sufficiently smart, self-confident, experienced, and media savvy to decide for himself what to publish under his name. You could be right that he wants to distance from the BPS model and I hope so (I'm the eternal optimist and have a very positive outlook on life and about motives and so on) but I don't see the article as being in any way anti-establishment. The establishment view of ME/CFS currently is that psychological problems (such as phobias) and trauma (including childhood abuse) and lifestyle choices (e.g. bad sleeping or eating habits) affect the patient's biology (that's all reasonable) and that, in turn, psycho-behavioural therapies, such as CBT delivered over the internet, can treat the biological abnormalities - No sensible doctor would claim that any single treatment is effective in all cases of any disease, so I don't see Phil Hammond as saying anything that could be construed as contradicting his colleague Esther Crawley. (I'm not trying to disagree with you by the way, as I hope you are right, I'm just airing what I see from my own perspective).

I think that when, in the future, when people look back on this period, they will see we were in the midst of a dramatic change, and shift of public perceptions. Things are happening all over the place, and in different ways, and the more the chicanery gets into the public arena, the faster the change will happen. Such dramatic change still takes a while of course, especially when in the mist of such a transition, but I think that is what we are seeing, but from the inside - I do hope so. The more the merrier, and it will take lots of small but very positive steps - no one step will or can do everything all at once, but the aggregate will be hopefully be impressive.

 

[slysaint]

I don't see Phil Hammond as saying anything that could be construed as contradicting his colleague Esther Crawley.

Isn't she his boss?
This sounds rather familiar
"The challenge in the meantime is how to help the 250,000 CFS/ME patients in the UK who need it now. Non-pharmacological approaches to CFS/ME include trying to establish a regular sleep pattern and to manage activity levels to avoid booming and busting, and the horrible payback of post-exertional malaise. This can be hard to do, but in MD’s experience many young people who have recovered enough to engage in a managed activity programme do very well, probably because stabilising sleep and managing activity levels affect metabolism and hormone levels, such as cortisol."

 

[Dx Revision Watch]

Isn't she his boss?

He works at the Bath Clinic.

http://www.medicalprotection.org/uk...05/14/a-day-in-the-life-of-a-portfolio-doctor

(...)

"Paediatric chronic fatigue service
I spend Fridays working in a specialist clinic for young people with chronic fatigue syndrome/ME. Prior to that I was a part-time GP for more than 20 years, but I found the job had become unsafe. My brain may be going soft, but I found I simply wasn’t able to accurately assess and support those with messy lives and complex chronic diseases on multiple medications in ten minutes. You can't practise whole person care and you can't allow patients to make informed decisions under such time pressure. In my new job, I have 90-minute consultations and it's completely transformed the way I practise medicine, and my beliefs about health and healthcare.

Chronic fatigue syndrome is a truly unpleasant illness still plagued with stigma and misunderstanding. There's a lot we still don't know, but if you listen, support, interpret and then hand over control of any chronic disease to patients, a surprising number develop the courage and confidence to live as well as they can with their illness. We use graded activity programmes where we try to stabilise sleep patterns, cut high energy activities back to a baseline for two weeks and then gradually increase these activities by 10% a week. It's a lot harder than it sounds, but the majority of those with mild to moderate chronic fatigue syndrome get significantly better in time.."

According to the same bio page, he has been a medical correspondent for Private Eye magazine for 23 years.

 

[AndyH]

He works at the Bath Clinic.
"We use graded activity programmes where we try to stabilise sleep patterns, cut high energy activities back to a baseline for two weeks and then gradually increase these activities by 10% a week."

So someone at 30% functional would be recovered at 13 weeks, someone at 50%, 8 weeks. Poppycock.
Sounds damn right dangerous.

 

[Countrygirl]

http://www.parliament.uk/business/p...ts/written-question/Commons/2016-11-22/54266/

This is in interesting question posed by an MP. I am sure that the BPS crew and the SMC will swing into action to cut this off at the pass.

Chronic Fatigue Syndrome: Research:Written question - 54266
Q
Asked by Kelvin Hopkins
(Luton North)
[N]
Department for Business, Energy and Industrial Strategy
Chronic Fatigue Syndrome: Research

54266
To ask the Secretary of State for Business, Energy and Industrial Strategy, if he will prevent the PACE trial researchers from being given further public research funding until an inquiry into possible fraudulent activity into the PACE trial has been conducted.




Asked on: 22 November 2016
Department for Business, Energy and Industrial Strategy
Chronic Fatigue Syndrome: Research

Joseph Johnson
Answered on: 25 November 2016

Department for Business, Energy and Industrial Strategy indicated that it will not be possible to answer this question within the usual time period. An answer is being prepared and will be provided as soon as it is available.

 

[slysaint]

He works at the Bath Clinic.

http://www.civitas.org.uk/content/files/HealthoftheNation.pdf
Phil Hammonds part starts on page 104 (pdf page)
ref to Esther Crawley 115
"Most of our service is provided by a team
of occupational therapists, physiotherapists and
psychologists, and we are aiming to collaborate across
the NHS to serve children in areas that are currently
poorly served. The following is the future vision of our
service, and potentially other services, written by my
consultant, Dr Esther Crawley.
Paediatric chronic fatigue syndrome (CFS/ME). This
illness is relatively common (1-2.5% of children)
and potentially devastating.
Most children who access
specialist services have been ill for over 18 months and
attend less than two days of school.
About 50% of children are bed-bound at some stage
and therefore mothers often reduce or stop work with a negative
impact on psychosocial well-being and family
finances.Whilst children and families access both
secondary and tertiary health care, they experience
barriers to diagnosis and treatment.

Treatment for paediatric CFS/ME is highly effective.
Between 66% and 85% of children will recover with
specialist treatment at six months compared with 8%
who do not get specialist treatment.
Whilst this should be good news for children with CFS/ME, few in the UK
are able to access local specialist care. Children with
CFS/ME are ill and their symptoms are frequently
made worse by car travel so they are often unable to
travel to distant specialist services. Sending out tertiary
specialists to provide distant clinics is an expensive use
of a limited resource and specialists do not have the
local knowledge to develop an integrated care plan.
Our solution has been to recruit local therapists to be
part of the specialist team delivering specialist
treatment locally using a franchise model of care.
Therapists receive training and supervision to obtain
and maintain competences in the same way as all team
members. Supervision is delivered using phone/Skype
and occasional face to face contact. Therapists from
satellite clinics attend team meetings either in person or
using Skype. As with all franchise models, the satellite
clinics collect outcome measures, use the same
paperwork, leaflets and other tools as any other
members of the team. They offer research opportunities
to eligible patients as in the main centre enabling us to
test interventions across a range of locations.
There are many advantages to this model of care."

 

[Wildcat]

.
@Countrygirl and All:

MP Kelvin Hopkins has asked more questions about PACE and the MRC also:

http://www.parliament.uk/business/p...ts/written-question/Commons/2016-11-22/54269/
Department for Business, Energy and Industrial Strategy

Chronic Fatigue Syndrome: Research
54269

To ask the Secretary of State for Business, Energy and Industrial Strategy, if he will request that the Medical Research Council conducts an inquiry into the management of the PACE trial to ascertain whether any fraudulent activity has occurred.

A
Answered by: Joseph Johnson
Answered on: 25 November 2016

Department for Business, Energy and Industrial Strategy indicated that it will not be possible to answer this question within the usual time period. An answer is being prepared and will be provided as soon as it is available.


~~~~~~~~~~~~~~~


22 November 2016


http://www.parliament.uk/business/p...ts/written-question/Commons/2016-11-22/54353/
Q
54353
To ask the Secretary of State for Business, Energy and Industrial Strategy, if he will take steps to identify those responsible for the Medical Research Council's policies towards ME research over the last decade; and if he will seek those people's removal from positions of influence over future of ME research.


.

 

[Wildcat]

.
Mind you, I don't trust the MRC to conduct any Inquiry into PACE .... thats why Tuller and the 40 odd signatories stated that an Inquiry into PACE should be done by suitably qualified persons from outside of the UK .... and from outside of the disciplines of psychiatry and psychological medicine. But then Kelvin Hopkins is asking for an inquiry into the management of PACE, and who at the MRC made it possible.

Those questions by MP Kelvin Hopkins are very hard hitting, and the PACE scandal is getting an airing in parliament now.

.

 

[Sean]

...but the majority of those with mild to moderate chronic fatigue syndrome get significantly better in time.."

Only if by "significantly better" you mean a small minority of patients reporting a marginal increase on vague subjective measures, in unblinded trials, at high risk of bias, with no supporting evidence from objective measures, and independent of your treatments (according to the long-term follow-up in the "definitive" PACE trial).

 

[Binkie4]

Thank you @Countrygirl. Almost speechless for the moment.