Advocacy in the UK

[worldbackwards]

Wessely gets it, doesn't he. His "CBT/GET is the only game in town" is a great example of a good tune.

Another I thought of - "All in the Mind" (trad. arr. Wessely/Sharpe)

 

[slysaint]

best tunes, even if they don't mean anything.

'ME/CFS, It's not all in our heads' chants quite well.

'ME sufferers are dieing to be taken seriously'.....literally

 

[sarah darwins]

I'm going to say what I think. Feel free to reciprocate:

Another I thought of - "All in the Mind" (trad. arr. Wessely/Sharpe)

Way too subtle!

'ME/CFS, It's not all in our heads' chants quite well.

Cynics will say "How do you know?"

'ME sufferers are dieing to be taken seriously'.....literally

We know that, but the mainstream will assume that it's hyperbole. People think they know what ME is, and they're pretty sure it's no big deal because someone they knew once had it.

Anything that sounds like a victim statement is not going to work. Campaigns in this area need to be specific or/and constructive, and try to avoid anything that sounds like whingeing.

And we have to start giving government and health administrators a reason to change. That's why I think emphasizing the way the UK is sinking into a babbling backwater while places like Stanford and Columbia are driving forward into exciting areas of research is the best way forward. I just don't know how to make a good tune out of that.

 

[worldbackwards]

Keep thinking about this every time I see the title of this thread

 

[AndyPR]

I did initially struggle for a thread title that I liked and then the 'bad pun' area of my brain sprung to life

 

[AndyPR]

I am an advocate
I am an anarchist
I know what I want
And I know how to get it
I wanna destroy bad science

Cause I
Wanna be
Advocacy
No bollocks psychology
.
.
How many ways to get what you want
I use the best
I use the rest
I use the enemy
I use advocacy

 

[slysaint]

the UK is sinking into a babbling backwater while places like Stanford and Columbia are driving forward
I just don't know how to make a good tune out of that

The UK's sinking, Kumbaya
Into a babbling backwater
While Stanford and Columbia
Are driving forward, Kumbaya

 

[sarah darwins]

The UK's sinking, Kumbaya
Into a babbling backwater
While Stanford and Columbia
Are driving forward, Kumbaya

Oo, you just had to, didn't you!

I should have known I would regret revealing my feelings towards that song.

 

[AndyPR]

Get, or at least encourage, your MP to the All Party Parliamentary Group on M.E., details here
http://forums.phoenixrising.me/inde...xt-weeks-appg-on-m-e-meeting-sept-2016.46544/

 

[L.A. Cooper]

Ditto @JaimeS

I think for me personally, I would (and often do) suffer relapses, some significant for the cause and to be heard. I would take my best day and walk through London until I had to drag myself across the concrete in searing pain. I'd freely do a lie in, risk getting arrested, tie banners to government houses, camp outside medical practitioners' doors, anything.

But there are a lot of people BARELY keeping their head above water who can't make those sacrifices that I am willing, and as much as I wish we could facilitate these sorts of movements, I also recognise that it's far too much to ask of a lot of people. Of course, there's also that narrative of "Oh, look at these militants, causing havoc in our good British streets, shame on them."

I think one thing I can say for the UK is that we struggle with being heard. US activists seem to have a really good hold on meeting with senators and representatives, being seen, being heard and imparting their knowledge, and I know that that's something that they've worked really hard on so kudos to them. But here? Can't even get people to write back. Will definitely work on it though, because I think that's a really weak point that could be resolved.

 

[BurnA]

Here is what I think.

We need attention. Writing a letter to an MP won't get us attention. We need to block traffic on a motorway, we need people on the top of rooftops, or chained to railings etc. We need to get the media talking about us - then they might investigate.

All publicity is good publicity when you have science on your side. Yes there might be a bit of a ruckus to begin with but that will be forgotten when the truth emerges.


ETA: another alternative is you tube videos. Well made 1-5 min clips, funny, insightful, documentary style etc. will all work. All on one channel. Get some celebrities or academics involved.

 

[JaimeS]

ETA: another alternative is you tube videos. Well made 1-5 min clips, funny, insightful, documentary style etc. will all work. All on one channel. Get some celebrities or academics involved.

I would do this!

Of course you just heard I would chain myself to something, so... well, maybe some ppl consider cameras more intimidating!

 

[AndyPR]

Just a quick thought I've had @L.A. Cooper - do you know if the guys behind the Bristol Millions Missing demo have tried to get in touch with John Darvall from BBC Radio Bristol? I believe he has covered ME as a topic a number of times on his radio show in a favourable way.

 

[actup]

@JaimeS sorry for late response to "any thoughts" on how to effectively protest. Coming out of crash after an unfortunate encounter with a yellow jacket hive -eight stings and lots of diphenhydramine=lots of sleep ;-)

I believe we're at a point in time where lawsuits might the be most effective form of protest. I've been waiting for certain catalysts like the recent solid biological research findings from Dr. Naviaux and political change
as in the discredited PACE trial.

There must be many experienced lawyers with milder cases of me/cfs or with family members afflicted with me/cfs willing to help but unable to participate without support and direction. What about a non profit me/cfs legal organization ( selecting cases and delegating manageable tasks amongst it's members).

I plan to try and find an attorney who will take my case against a large, respected clinic in my area which has a policy of strongly discouraging me/cfs and fibromyalgia patients from seeing specialists. The Rheumatology and Physiatrist depts out and out refuse to see patients with above diagnoses even with referrals. I've probably had psoriatic arthritis for ten years but was only recently diagnosed by an outside Rheumatologist. The multiple joint damage is severe, irreversible and causes a chronic mod-high pain level. Oh and I still have me/cfs. The symptoms of both illnesses have some overlap but my rheumy doesn't think my lower body muscle pain, daily flu symptoms, cognitive problems or severe PEM are related to the PA diagnoses.

My son who is an attorney (he has me/cfs) in another state believes I have a good case. He can work with a local attorney and help with the case.

There must be many thousands of pwcs out there with equally good or better potential cases. Are there any attorneys, lawyers or barristers out there who might be willing to weigh in on this form of protest ( lawsuits)?

 

[L.A. Cooper]

Just a quick thought I've had @L.A. Cooper - do you know if the guys behind the Bristol Millions Missing demo have tried to get in touch with John Darvall from BBC Radio Bristol? I believe he has covered ME as a topic a number of times on his radio show in a favourable way.

Andy, I don't know, but this is a really good point, thank you. I'll bring it up; John Darvall is a huge ally.

 

[AndyPR]

#MEAction UK have just posted this sample letter as something that could be sent to your MP in support of MillionsMissing, and, obviously, it's possible to use it as a template letter if you wanted to focus on something else.

Use this link if you need to find the contact details for your MP - http://www.parliament.uk/mps-lords-and-offices/mps/

MillionsMissing MP Letter

The #MEAction Network UK·Wednesday, 14 September 2016

Dear [MP’s Name] ,

Re #MillionsMissing protest for health equality for Myalgic Encephalomyelitis 27th September, [Time], at [Protest Location]

On 27th September I will be attending a demonstration outside the [Location, relevant building ie Dept of Health] to draw attention to the injustices facing hundreds of thousands of people, like myself, affected by the complex and chronic neuro-immune condition Myalgic Encephalomyelitis (M.E.)(i)

The event will form part of a global day of action in Belfast, Bristol, Cardiff, London, Nottingham and Oxford as well as internationally.

I hope this could be an opportunity to meet with you and tell you more about the MillionsMissing movement and how you can support me and others with ME/CFS in [Local Constituency] in our demand for health equality.

#MillionsMissing calls attention to the millions of people worldwide missing from their careers, schools, social lives and families due to this devastating illness. Research shows M.E. is more disabling than most better known chronic diseases such as multiple sclerosis or stroke,[ii], robbing patients of mental as well as physical function. M.E. is thought to affect 250K people in the UK, including children and young people. In 2003 it was estimated to cost our economy £3.5 billion p.a. in lost productivity, healthcare, and welfare benefits.

#MillionsMissing also calls attention to the millions of pounds or dollars missing from research funding compared to chronic conditions with a similar disease burden such as lupus or HIV. Over the last 20 years the UK government has only spent around £2m in biomedical research into causes and treatment for M.E. Compare this with £9 million spent on research into HIV in 2011 alone. Around 80% of UK publicly funded research has gone into psychosocial studies, which have failed to discover the cause or provide effective treatment for M.E. However, a recent groundbreaking study from the University of California, San Diego[iii], identified abnormal metabolic mechanisms in M.E. patients, giving hope of finally developing a diagnostic test and treatment for this disease. But we desperately need to accelerate the volume and of high quality biomedical research in order to give hope to thousands whose lives are lost to M.E.

#MillionsMissing is a declaration by patients worldwide that we refuse to be invisible and ignored any longer.
We demand equality of healthcare with other comparable diseases. Investment in biomedical research into causes and treatments. Until effective treatment is found, we demand compassionate health and social care and social security provision to enable us to live with dignity. The stigma and neglect that has resulted from the flawed psychosocial model of M.E. must come to an end.

Will you meet me on 27th September at [Protest location]?

I look forward to hearing from you.
Yours sincerely,
[Your name]

(i) M.E. is a complex multi-system condition that causes intense muscular and joint pain, cardiovascular problems, immune and digestive system difficulties, extreme fatigue and paralysis, cognitive difficulties and extreme sensory sensitivity. Serious cases can lead to bodily shutdown, a coma-like state, and even death.
(ii) Nacul et al. (2011), The functional status and well being of people with myalgic encephalomyelitis/chronic fatigue syndrome and their carers. BMC Public Health 11:402.
(iii) http://www.openmedicinefoundation.org/...

Link to the original note on Facebook https://www.facebook.com/notes/the-meaction-network-uk/millionsmissing-mp-letter/1668403666810923

 

[Cinders66]

I think as someone mentioned saying that uk just funds psychosocial research will just get a reply pointing out the 5 or 6 biomedical projects MRC have funded of worth past few years and an excuse that it's not enough but it's an emerging field, trying to gain interest cMRC holds a conference etc.

I've written letters to Doh, MRC, MP in the past but never get past that brick wall and crumb thrown that they're trying to do something

I think the point to emphasise is how naff that in effort is comparwd to need, the #MEACTION letter above is good for that and also that they could do more. They could scrap Oxford criteria polluting the literature with discussions on how cbt can be refined and tailored etc as if enough etc, really the NICE criteria should be scrapped to put us on equal field as the rest of world research, and they could again ring fence cash. Mrc Will say they don't usually do this but a) they have done for other needy areas eg HIV, b) parliamentarians2007 said they should ring fence millions, they didnt c) the 2012 RFA was successful d) after the 2012 funding even AFME said to get the field established we needed more RFA and MRC refused. It's not that they are doing all they can , they just aren't. They are plodding on with an approach and result indistinguishable from deliberate dawdling.
Ending their favouring of wide encompassing cfs umbrellas (very different to usa & Australia) would also help the illnesses to be better and more accurately understood and more respected. "Fatigue spectrum" language obscures the wide ranging symptoms and potential to cripple.

 

[Countrygirl]

I think this is the correct place to place this post.

This is a report of IiME's (attempted) meeting with the CMOs (Chief Medical Officers.......... who didn't actually turn up ) in January 2017.


http://www.investinme.org/IIME-Newslet-1701-01.shtml

Invest in ME Research Visit The CMO of England's Office

.........................


Invest in ME Research had requested a meeting with all four CMOs (England, Wales, Scotland and Northern Ireland) and on Wednesday 11 January 2017 a meeting took place with the Deputy CMO of England Dr Gina Radford at Whitehall Court, London.

Invest in ME Research previously wrote about our intention to engage with the Chief Medical Officers of the UK and appraise them of the research into ME that the charity is facilitating and the current issues which continue to exist and which we believe the CMOs have a duty to confront - A Summit of CMOs

ATTENDEES:
APOLOGIES:

• Dr Gina Radford, Deputy Chief Medical Officer, England
• Professor Jonathan Edwards (UCL)
• Dr Ian Gibson
• Countess Mar
• Fane Mensah (PhD student, UCL)
• Representatives from Invest in ME Research

• Dr Nigel Speight
• CMO Scotland
• CMO Northern Ireland
• CMO Wales

AGENDA:

• Introductions and apologies
• Background to the meeting
• NICE recommendations
• Data on ME patients
• Services
• Children
• Research
• Suggestions from IiMER
• Summary and Actions

Prior to the meeting the charity had submitted two documents to the CMOs and participants.

One concerning children and the deplorable state that exists as well as case studies of children badly affected by the way that the existing mentality toward ME is allowed to distort proper healthcare. In this document evidence was presented to the CMO of the way many families of children with ME are being harassed and subject to child Protection proceedings.
Though the establishment organisations have totally failed children with ME the harrassment is not, however, confined to vulnerable patients or their families either - as witnessed by this story - (click here).

The following document had also been sent prior to the meeting to all attendees - Summary of developments following CMO’s report of 2002

It was agreed that the meeting would take an informal format to allow free discussion and the available agenda would be used as guidance.
It was mentioned that Invest in ME Research had sent in information beforehand to allow the CMOs time to familiarise with the issues on the agenda.

Dr Radford said she had read the information given and stated that the CMO could not resolve most of the problems mentioned as the CMO’s remit had changed and many of the issues mentioned would be the responsibility of NHS England.
She would, however share the notes with other CMOs in Wales, Scotland and Northern Ireland.

The charity pointed out that the CMO’s remit includes influencing policy and that from experience it seems that ME is not on the CMO’s radar.
The charity mentioned that the previous and current CMOs had never accepted the charity’s invitations to attend or speak at the international conferences that the charity had organised in the past 11 years.
The invitation was always either too early or too late.
There never seemed to be a right time and this sent a message to patients, carers, researchers and doctors interested in ME that ME was not on the CMO’s agenda.
The charity explained that the meeting was taking place and as far as we were concerned we were talking directly to the CMOs of the UK.

The charity asked directly whether the CMO was happy with the current status of ME research and what was their official opinion on ME?

Dr Radford stated that she could not speak for the CMO and she made the point once again that the CMOs of England, Wales, Scotland and Northern Ireland do not run the NHS. It is the NHS England that runs the services and we would need to discuss these matters with them.
The CMO’s relationship with the NHS and remit has changed since 2002 when the 2002 CMO report on CFS/ME was published.
Parameters have changed and now the CMO’s remit is to give broadly advice to the government.

The charity read out the publicly stated remit of the CMO such as protect the public, tackle inequality, review policy (mentioned no policy for ME), influence by statements and discussions. CMO Remit

Countess of Mar said Dr Martin McShane makes nice noises but nothing happens.

The charity described cases provided in the accompanying document where severely ill children with ME who failed to recover with CBT/GET programmes were then re-diagnosed and given labels such as pervasive refusal syndrome and parents/carers accused of Munchausen Syndrome by Proxy.

The PACE trial was mentioned and Dr Radford had not read PACE.
So Countess of Mar described the well-known shortcomings of the PACE trial including the Information Commissioner’s Office being involved leading to a court case to get raw data released and reviewed according to the original protocol and the damage it has caused to the worldwide patient community.

Professor Edwards explained the reasons why the PACE trial and CBT/GET studies were poor science and the system is failing as it allows authors of these papers take on roles as reviewers of the same papers.
The Cochrane review was an example of this.

Dr Gibson described the annual IiMER Colloquium/Conference and how the science is getting interesting.
There seems to be lack of duty for biomedical research into ME, neglect in taking an all- around approach and ME is not getting its fair share.
Dualism was a waste of time and research should open up and the government has failed to take it up.


Fane Mensah described the situation for a young researcher.
He said there needs to be support for young researchers.
Students who are thinking about their career choices need to know there is a future in this exciting and complex field.
He described how the patients he sees as part of the research funded by Invest in ME Research are so grateful that someone is taking them seriously and listens to them.

The charity asked Dr Radford how the CMO made decisions when taking up issues such as antibiotic resistance, Ebola, Zika virus etc.?
Dr Radford said it was because they were major worldwide issues.
The charity said that ME is a major worldwide issue - yet no one knows numbers affected (only rough estimates) and the diagnosis is inaccurate and variable.
Sally Davies should at least make a brief visit to the conference or send a representative to learn about the latest developments.
Dr Clare Gerada as the chair of the Royal College of GPs gave a talk at the IIMEC8 conference in 2013 and admitted GPs knew very little of ME.

Professor Edwards said ME was a bigger problem than rheumatoid arthritis.
Epidemiology in general was lacking and current service provision was poor.
The direction of ME research has not been founded in good science and the Norwegian phase III rituximab trial results will guide the future.
The psychiatrists do not understand the problem and that is a BIG problem.
The PACE trial is a text book case how not to do a trial.

In Practical terms: we need physician led services (very few of which currently exist) which provide help and continued surveillance.
ME is an identifiable problem due to the characteristic of post exertional malaise (PEM).
Surveillance is needed as other diseases such as lymphoma can be hidden in that cohort.

Major change has happened in USA, but not in the UK.

Dr Radford asked what we wanted to ask the CMO.
The following points were stated -

• Genuinely appreciate the size of the ME problem
• Maintain consultant led services
• Appreciate new research
• Appreciate current services have been hijacked by bogus science and patients find that dispiriting and dangerous

NICE was briefly discussed and a decision whether the guideline will be reviewed should be made by the summer of 2017.
Dr Radford said that it is important there is new research that they can look at otherwise the guideline remains in a vacuum.

The current recommendation of GET was brought up as harmful and putting children in danger.
The severely ill need information and support.
Professor Edwards mentioned MS patients get 6 monthly neurology appointments but ME patients get nothing.

Problems with FITNET were mentioned and Dr Radford was aware of this and stated that FITNET was being reviewed.

Dr Gibson said research is moving toward finding biomarkers.
Metabolomics was proving promising as presented at the Invest in ME Research international conference.
The approach has been too simplistic in the past.

Dr Radford mentioned she is involved in an alliance of rare diseases and that there are hundreds of diseases in the same situation as ME.
The charity said these rare diseases are recognised and patients are not dismissed and stigmatised by the establishment the way ME patients are.
ME patients’ healthcare complaints, unrelated to ME, are often ignored and dismissed due to the patient’s ME label.

The importance of accurate diagnosis with careful history taking was mentioned as endocrine disorders are often misdiagnosed as ME.

Actions
Dr Radford finished the meeting by summing up action points

• Highlight emerging research (relevant for NICE guidelines)
• Mention IiMER colloquium/conference to people of influence
• Agree that a new meeting arranged by the charity will take place later in the year when the Norwegian rituximab trial results would be known by the team involved

IiMER Summary
Did we expect more from the visit with the CMO?
Of course!

Our aim is not to have just a cosy chat and keep the status quo. Action is required.

As we stated before ME is a UK/worldwide problem - we did expect (and request) that all UK CMOs attend.

But we have the CMO's attention now, to some extent.

We will not leave it alone.

We have a follow-up meeting planned and we will ensure that the CMOs of UK do not remain in the dark about the seriousness or severity of the issues with this disease.

References
Articles on PACE Trial

Articles on ME/CFS by Margaret Williams and Professor Malcolm Hooper

1

 

[MeSci]

So Dr Nigel Speight and

• CMO Scotland
• CMO Northern Ireland
• CMO Wales

are the ones who didn't turn up?

 

[Jo Best]

So Dr Nigel Speight and

• CMO Scotland
• CMO Northern Ireland
• CMO Wales

are the ones who didn't turn up?

This is how it looks on my laptop screen: http://www.investinme.org/IIME-Newslet-1701-01.shtml