United Kingdom: Action for ME (AfME) news

I agree. You'd usually see this post in a university department where there might be numerous grant-winning staff who need a bit of help and overall vision/strategy. There are barely any funds to supervise! Mainly DecodeME, but that should surely be being done by someone at Edinburgh.

 

This is a big job and, to my mind, shows that AfME is serious about its new Breakthrough-ME research strategy "that will provide the scientific knowledge required to deliver the diagnostics, treatments and eventually kills that we so desperately need."

Partnering with Chris Ponting, the strategy aims to:
— shows the genetics research Summit stimulates new studies (this summer).
— Establish the first Genetic Centre of Excellence. This will be a virtual network that builds on genetic insights from DecodeME. "We will establish a programme of high-quality research, supported by the centre of excellence."

The research director will be responsible for delivering these as well as "securing programmes of research for the top 10 priorities for ME Research" resulting from the Priority Setting Partnership.
The job description also emphasises the role include supporting fundraising for research.

The Research Director will be a member of the senior team running the charity.

Person specification includes:
— a successful track record in the funding, management and evaluation of complex, multi-disciplinary research programs.
— Demonstrable experience of building successful partnerships with medical research organisations and other key stakeholders.

I'm pleased because this looks like a serious move by Action for ME.

 

Agree - though more broadly it is matter of appropriate allocation of resources matched to aims and ambitions.

As an example for comparison, historically MEA and AfME have had different staffing models where the former has a much lower staffing cost, yet the MEA can not be said to have had less success at reaching it's aims and ambitions than has AfME; however the MEA's reliance on dedicated volunteers does make it more vulnerable to unexpected changes in personnel and in the future this may become unsustainable.

Even where a fully paid workforce model is applied, organisations do have choices about pay grade per post and overall salary structure. There's fairly well established benchmarking in the 3rd Sector (confusingly also called the voluntary sector, aka charity, aka non profit) in the UK where pay scales are linked to total organisation income and fundraising models, in AfME's case it's fair to say its CEO is paid somewhat above the size/sector median and that has consequences for grading for other posts within AfME. The research director post looks to be paid at the median for the sector but somewhat higher relative to the organisation's size.

 

It suggests shift in gear, and also ambition, which is much needed. We're not going to get anywhere with £100k here and £100k there. I hope this pays dividends.

 

I think this is very good news, and glad to see it advertised.

We need these kind of people: ME research needs to grow significantly, and that requires leadership.

Regarding cost, my view is that this is not a place to scrimp and save: we want to pay what it takes to get the best people as we can.
In these situations driving good research projects can also drive increased income. There is an element of 'hire for who you want to be not who you are'.

 

On that £50k salary:

Yes, and the aims and ambition are high. We desperately need much greater ambition for ME/CFS reserarch from our charities.

Although this is a job in a charity, AfME need to recruit from outside the sector - someone with serious research experience. £50k hardly seems excessive for that.

 

There is a chance that there will soon be movement from the UK government on a national ME strategy. Remember this?

https://twitter.com/user/status/1461685112416919560


The Action for ME announcements are presumably in anticipation of that, and DecodeME is making this more possible.

 

Yep if you want a PhD and a bit of experience, (and given that the pension is different to that in sectors such as university, public sector) then £50k seems about for what you'd need to offer

 

Also remembering that ‘end of March’ we hopefully have some news from the PSP?

https://twitter.com/user/status/1493851134468968448

 

'As the only UK charity that supports children and adults with M.E.'

I take exception to this claim as 25% group support both adults and children!

 

I think this will be coming within the next few weeks.

 

"Shaping our future together: our call for a national strategy for M.E.
May 05, 2022

This M.E. Awareness Month, we launch Action for M.E.’s new five-year strategy, Shaping our future together. We also have a simple-text version.

Developed in partnership with people with M.E. of all ages, carers and professionals, it sets out four ambitious outcomes which we believe will help us end the decades of ignorance, injustice and neglect faced by people with M.E.

These outcomes are:

1. The lives of people with M.E. are improved by effective access to the information, support and advocacy they need.
2. The health of people with M.E. is improved via access to our holistic Healthcare Services, and the National Institute for Health and Care Excellence (NICE) guideline for M.E. is being effectively implemented across NHS services.
3. Increased funding for high-quality research by more researchers leads to effective treatments for M.E.
4. The UK Government establishes and leads a national strategy for M.E."

https://www.actionforme.org.uk/news...ther-our-call-for-a-national-strategy-for-me/

 

Point 4 is problematic - at least in the way it is worded. Health is a devolved function and the current relationship between central Government and the devolved Parliaments/Assembly is not one that readily supports "the UK Government establish(ing) and lead(ing) a national strategy. At a time when there is increasing pressure for a second devolution referendum in Scotland and (depending on the result of yesterdays elections) the call for a border poll in Ireland - the wording of point 4. looks inept. Does it just mean England ? in which case that needs to be specified, and then what about the devolved Parliaments/Assembly ?

 

Just tried to see if there is anyhing but just directed to a wordpress site that isn't up and viewable yet.

 

Try again in a week or so!

 

PSP results will be released May 12th.

 

It's probably an accurate reflection of what they offer. Note they are talking about their in-house service (https://www.actionforme.org.uk/get-support-now/our-healthcare-services/healthcare-services-for-me/), which I think is now managed by ex-ME Trust staff.

 

Spring 2022 digital magazine, https://www.actionforme.org.uk/uploads/pdfs/InterAction issue 110 Spring 2022.pdf