United Kingdom: Action for ME (AfME) news

PhD Studentship application call

The purpose of our PhD Studentships is to support the career development of scientists in the UK who are in the early stages of their research career and have the potential to become leaders in the field of M.E. research. The Studentship provides match-funding for up to three years totalling £45,000. We are already funding two PhD Studentships with Prof Chris Ponting and Prof Neil Harrison.

Our 2021 application call was launched on Thursday 7 January, and the deadline for applications is noon on Monday 22 February.

https://www.actionforme.org.uk/rese...al-research/research-we-fund/phd-studentship/

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People in Scotland: Would you like to be trained to help support people with M.E./CFS? We are currently looking for advocates in Scotland to work with us in helping to get the voices of people with #mecfs heard. Apply today at actionforme.org.uk/get-informatio…
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Paid and volunteer opportunities at AfME can be seen here, https://www.actionforme.org.uk/get-information/about-us/working-and-volunteering-for-us/ (same link as in tweet above).
 
Last week, the All-Party Parliamentary Group on Coronavirus called for Long Covid to be formally recognised as an occupational disease for frontline health workers.
Everyone living with any post-viral condition deserves understanding, support and appropriate treatment. So what about recognition for those who have lived for years and sometimes decades with #MECFS?
Bob, whose wife Catherine has M.E., will speak on BBC Radio Tees tomorrow morning about this, alongside our CEO Sonya Chowdhury. Tune in around 8.05am to listen.
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"Action for M.E. is pleased to announce its trans-Atlantic partnership with US charity Solve M.E., focused on enhancing the wellbeing of people with M.E., raising awareness, delivering policy changes, and increasing research on its causes and possible treatments."

The partnership consists of three initiatives:
  • A two year postdoctoral fellowship designed to prepare postdoctoral researchers to excel in a career focusing on applying computational biology,
  • biostatistics, quantitative genetic, and data science to understanding the molecular basis of M.E. It includes one year being mentored by Prof Chris Ponting at the University of Edinburgh (also co-leading DecodeME) and a year mentored by Dr Liz Worthey at the University of Alabama.
  • Exploring how a digital platform like HealthTree can benefit people with M.E., connecting them with peer-support, shared experiences of symptom management, and research to which they can contribute. HealthTree has already started to do this successfully for people with myeloma.
  • Global advocacy in collaboration with the International Alliance for M.E., including plans for this year’s M.E. Awareness Month.

more here:
USA: Solve ME/CFS Initative
 
MEMarge said:
I am particularly pleased to see the research officer post. Hopefully this will help with the overall understanding of the biomedical science in the charity.
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Amw66 said:
For children it may depend on who heads up that section. Was previously one of EC' s fans
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worth bearing in mind that Action for ME is a partner in the DecodeME study its chief executive, Sonya Chowdhury, is chair of the study's management committee and played a huge part in making the study come about, as well as in setting it up. I don't think there is any need to worry about a psychosocial focus.
 
Simon M said:
worth bearing in mind that Action for ME is a partner in the DecodeME study its chief executive, Sonya Chowdhury, is chair of the study's management committee and played a huge part in making the study come about, as well as in setting it up. I don't think there is any need to worry about a psychosocial focus.
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Sonya has worked hard to turn things around, and is to be applauded. She brings experience to the table as her son has ME.

The children's section was AYME , which merged with AfME. Its head was retained as head of children's section and was a major supporter for EC' s research, including FITNET. I sincerely hope there has been as significant a change there too.
 
I agree that AfME has been seen to take some positive steps recently. Not all good but not all bad either.

I'm afraid it will take time and action before there will be automatic trust with anything AfME is involved in. I've seen them consistently throw us under the bus for many, many years. I watched their involvement with PACE at the time.

If Sonya turns things round then hats off to her. If they do something well I'll happily & publicly applaud that.

In the meantime, I'll wait and see.
 
Amw66 said:
Sonya has worked hard to turn things around, and is to be applauded. She brings experience to the table as her son has ME.

The children's section was AYME , which merged with AfME. Its head was retained as head of children's section and was a major supporter for EC' s research, including FITNET. I sincerely hope there has been as significant a change there too.
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Mary Jane Willows, who was head of AYME left last year.

Who was r=their last science person @Amw66 ?
 
MEMarge said:
Mary Jane Willows, who was head of AYME left last year.

Who was r=their last science person @Amw66 ?
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@MEMarge
You have got me there - sience as an all encompassing description I would struggle with. I am not aware of a " scientific advisor" role previously .
Previous input has been from various roles - Hazel O' Dowd , Emily Beardall have both contributed - I won't comment on their contribution, there are threads which would elucidate this more succinctly.

Julia Newton and Gregor Purdie were both medical advisors ( not sure if these are still in place - particularly given Newton' s step down from research)
Gregor Purdie helped draft the guide for GPs in Scotland which is not bad , it is just dated, and most GPs are not aware of its existence
 
Quoted from AfME email April 2021 newsletter:

Survey: the impact of Covid-19 on people with M.E./CFS
We’ve teamed up with #MEAction UK to launch a survey looking into the effect that Covid-19 has on people with M.E.

The survey aims to explore if M.E. symptoms are affected by Covid-19, how long any change in symptoms last and whether cognitive and/or physical functioning changes. The survey also ask about any new symptoms and how long these have lasted. Finally, it looks at the impact Covid-19 has had and whether it has led to increased use of healthcare services.

The survey will take approximately five minutes and is for people with M.E. who have had Covid-19 symptoms and/or been diagnosed with Covid. Respondents do not have to be a UK resident to take part. All responses will be anonymous.

Join our Breaking Isolation workshops for young people with M.E./CFS
On April 10, 17, and 24, we're hosting free Breaking Isolation workshops for young people aged 8-14 who have M.E./CFS.

These workshops are a great opportunity for those who take part to get to know each other and enjoy fun games and creative activities. They're designed to be fun and not demanding, with breaks built in to accommodate attendees.

Registration is open online for ahead of Saturday’s first workshop of this block. We look forward to seeing everyone there!
 
Odd survey. Looks more like it's simply asking whether ME patients got Covid, and whether they experience PEM, which seems redundant. Unless I missed something, those are the only questions I had.
 
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