Thunderclap for M.E. Awareness Day

[Action for M.E.]

Action for M.E. is planning a Thunderclap for M.E. Awareness Day.

What is a Thunderclap? It's sort of like an online flash mob!

If you sign up (it's free and only takes a minute), the Thunderclap website will automatically post our M.E. awareness-raising message on your Facebook/Twitter/Tumblr feed (you can chose any or all) at noon (UK time) on Monday 12 May.

Our message says: "Many symptoms, too little research, no proven cure. It's M.E. Awareness Day: read the facts, spread the word #MECFS http://thndr.it/1i9ovmY”

To take part, please visit (and share) www.thunderclap.it/projects/9782-m-e-awareness-day-2014

Thanks very much

Action for M.E.

 

[Min]

What will this achieve? Awareness is all very well, and most people have now heard of M.E. (and many believe the propaganda that the psychiatric profession spread about it) but like your Downing Street reception to raise awareness, it achieves very little on its own.

Surely raising funds for biomedical research would be more useful? You are the UK's largest M.E. charity - how about your topping up Invest in ME's Rutiximab trail funds so that it can go ahead.

 

[Action for M.E.]

You’re right, M.E. is much better known than it used to be. But many, many patients tell us that their friends, family, GPs and other professionals still don’t really understand what it means to have M.E., which is why we are trying to raise awareness of the facts.

In addition to asking patients and carers to take part in the Thunderclap, we are also asking researchers and clinicians to spread the word among their colleagues and contacts. And raising awareness isn’t all we are doing, by any means. We fund and support an ongoing programme of medical research, which you can read about at www.actionforme.org.uk/get-informed/research/our-research-related-activity

 

[peggy-sue]

I've had a look at the site... I am very curious about this statement which we should be sharing as part of it.

"sharing the shocking results (available Monday 12 May) of our survey about the injustice people with M.E. face in health and welfare provision"

Why will it take until May to release the results? The awareness day is in March.
If they are known to be shocking, then they are KNOWN.

Why not release these results now?

It might aslo be helpful if an officially sanctioned organisation such as AfME would speak up and out against the psychiatrists who have dominated the field, misappropriating all the research funding and who are to blame for all the confusion surrounding this disease

That would be something important to add to the Awareness Day indeed.

 

[Min]

Action for M.E. decided to fund three projects at a total cost of more than £61,000,

That is a tiny amount of money. It's less than your CEO's salary.

I find it difficult to see this awareness project as nothing more than an empty gesture from an organisation that was heavily involved in the PACE trial, that works closely with the Wessely school of psychiatry, and that gives shamefully little to biomedical research.

 

[Action for M.E.]

Peggy-Sue, we’re still analysing the detailed results of the survey – more than 2,000 people took part so we have an awful lot of data – and plan to release our report on M.E. Awareness Day (on 12 May) for maximum impact.

Min, we are not exclusively a research charity. We also devote resources to providing information and support, including our Welfare Rights Line, to help people affected by M.E. make informed choices.

 

[Min]

We also devote resources to providing information and support, including our Welfare Rights Line, to help people affected by M.E. make informed choices.

Wouldn't it help people with ME to make choices if you gave them full membership and voting rights instead of only associate membership? Your only full members are your self appointed executive.

How much do you spend annually on research and offering information and support in comparison to the amount you spend on salaries?

How did your involvement in the PACE trial benefit people with myalgic encephalomyelitis in any way?

 

[Esther12]

It does seem that in the UK the most serious problem with misinformation around ME is a result of the way the results from PACE were spun and misrepresented - yet Action for ME have not criticised this, or called for the release of the results for the outcome measures laid out in the trial's protocol, which would help undo some of the harm done.

Better to have an illness no-one is aware of than to have one people are misinformed about.

 

[Min]

Better to have no M.E charity than one that both supported and was involved in the PACE trial, and that does not condemn the misrepresentation of the results or the refusal to release the deterioration rates.


How much were your two PACE trial obsrvers paid please?

 

[peggy-sue]

Perhaps you didn't see my other query? @Action for M.E.
It might also be helpful if an officially sanctioned organisation such as AfME would speak up and out against the psychiatrists who have dominated the field, misappropriating all the research funding and who are to blame for all the confusion surrounding this disease

That would be something important to add to the Awareness Day indeed.

 

[Action for M.E.]

Not sure what you mean by the phrase ‘officially sanctioned’ – we don’t receive any Government funding (apart from a small grant in Scotland) – but we absolutely agree that speaking out against too little biomedical research is essential.


We do not have the huge resources necessary to become a major source of funding ourselves. Instead, we invest in small-scale pilot studies with a view to enabling research teams to develop competitive proposals for mainstream funding of large-scale projects.


In 2013 we invested £71,000 in medical research, including the UK’s first M.E. Biobank and the Disease Register. Announcements about 2014 research funding will be made during M.E. Awareness Month. Our members, and those who have donated to our research appeal, will be invited to vote for the project proposal they want us to prioritise.


We consistently consult with people affected by M.E., not just our members, to inform our work; recent examples include our major health and welfare survey (the detailed results of which are still being analysed) and our newly established Patient and Carer Reference Group, which has around 45 members.


We have already explained our position on the PACE trial (on our website and in responses to our CEO Sonya Chowdhury’s blog on this site) and won’t be going into any further detail about it.

 

[Min]

In 2013 we invested £71,000 in medical research

That is £4k less than your CEO'S salary! Could you not donate more if your salary bill were not so very high?

By 'members', do you mean just the executive or do you include your associate members to whom voting rights are denied?

I am not surprised that you do not wish to discuss your involvement with the PACE trial (which has set treatment of myalgic encephalomyelitis in the UK back by decades) , but please can you tell us how much your two observers to it were renumerated? Will your charity continue to be involved in research into graded exercise?

 

[peggy-sue]

@Action for M.E.
What I mean by "officially sanctioned" is that NICE actually DO pay attention to what you say - because of your support for PACE etc.
I mean that it was AfME who had to approve the Scottich Guidelines - but didn't - they held publication up for a whole year, while watering the guidelines down to make tham compatible with NICE, and to give NICE and the psychiatric lot more clout.

AfME should currently be dealing with NICE about their refusal to review their guidelines and putting them on a special static list NOT to be reviewed.

In other words, ACTION.

Not just having a bit of fun with a collage of pictures and posters of sufferers on the net.

 

[Esther12]

We have already explained our position on the PACE trial (on our website and in responses to our CEO Sonya Chowdhury’s blog on this site) and won’t be going into any further detail about it.

As far as I can tell, you've not explained your position on PACE, but have just said that you are refusing to do so.

Do you think that patients should have access to results for the outcome measures laid out in the trial's protocol?

Do you think that the post-hoc criteria for recovery is likely to mislead patients and clinicians? What percentage of patients do you think PACE showed recovered following CBT/GET?

Also, your summary of PACE does not mention the danger or response bias affecting results, which is particularly important given the results from the trial's more objective outcome measures: there was no improvement in employment rates for CBT/GET, no improvement in 6mwt results for CBT and only an improvement was only just statistically significant for GET, and did not reach the standards for clinical significance laid out by the researchers. Your piece on PACE is written as if the questionnaires used are reliable outcome measures for showing minor improvements to behavioural interventions in a non-blinded trial when we have no evidence to indicate that this is true, and the evidence we do have (like CBT improving questionnaire scores, but not levels of activity measured objectively with actometers) indicates that it is false. The PACE trial had been due to use actometers, but White et al. have indicated that these were dropped on the suggestion of patient representatives on the trial steering committee - on which Action for ME sat, and their representative has since worked to prevent the minutes of these meetings being released.

Does anyone at Action for ME actually understand the problems with the way in which the results from PACE have been spun, or why it's so important to have the trial's protocol defined outcome measures released? None of your responses ever indicate that you do.

There should be someone at Action for ME who is able to take personal responsibility for your response to PACE, and explain it properly to patients.