UK Action for ME - policies, actions and publications - discussion thread

Dolphin said:
Wasn't sure where to post this. I doubt it matters, but I saw someone highlight that all 13 of their staff in this photo are female.
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One would hope it doesn't matter, though I'm not sure such an imbalance in any workforce that has interaction with a membership or the public would be healthy as a sustained feature. Third sector employment is heavily weighted toward women - about a 3:1 imbalance, UK public sector (including NHS) has f/m imbalance of around 2:1 but across public and private sectors, admin and office staff split 3:1 f/m so a small organisation that is fundamentally office based is always likely to be skewed toward a female majority workforce.
 
Invisible Woman said:
They do have some blokes on the team though the majority are women -

https://www.actionforme.org.uk/get-information/about-us/our-staff-team/

I reckon if it were all blokes in the picture then similar comments would soon be made.
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Interestingly their Scottish co- ordinator is not listed ( Theresa Burns).

I believe she is seconded to working on the Scottish Neurological review which may mean she is being paid by Scottish Government.

Dosnt seem to have been backfilled
 
I fail to see what the issue is here. Non-senior roles in the charity sector as a whole tend to be filled by women.

Also, AfME are aware of this imbalance.

"We are currently underrepresented by men, non-binary and black and minority ethnic people in our workforce and would particularly welcome applicants from these groups."

https://www.actionforme.org.uk/get-information/about-us/work-or-volunteer-with-us/
 
Andy said:
I fail to see what the issue is here. Non-senior roles in the charity sector as a whole tend to be filled by women.
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You're quite right.

Personally, I think the best person for the job is more important than what sex they are. How a team performs is more important than how it looks. Sure, in an ideal world a team reflects some ideal balance but the most important thing is a team that works.

I do think a team with all males would attract comments more quickly, possibly that's my bias. My comment reflected the thought that it sometimes seems as a society we caught up in appearance at the cost of effectiveness.

It was not intended as a criticism of AfME & I apologise if it came across this way.
 
Sly Saint said:
I don't think that (as in this case) nearly 10% of the charitys income (ie c.£90,000) for the CEO is exactly low.
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There's very large variation across the 3rd Sector (the term 'Charity' has so much historical and moral baggage). Some 3rd sector pay is abysmal, especially where the comparator jobs are in the private sector (care etc).

Trade Unions were once very slow to recruit in 3rd Sector work places but as the 3rd Sector began to pick up contracted out public services, Unions and employees had some success in linking pay and conditions to Local Authority or other Public Sector standards, and that is what one would now find in well run 3rd Sector orgs. CEO pay (as distinct from the rest of the work force) has long been an area of difficulty. Depending on the role, a Private Sector comparator may be more appropriate and in large 3rd Sector organisations managerial and director level pay and recruitment is a unique field.

For AfME the CEO salary is IIRC at the top end, but not excessively so, of the range for a 3rd Sector organisation of its income range. It's tempting to compare AfME to the MEA which doesn't have a CEO role, but I don't think that comparison is helpful. The MEA has operated with free volunteer* work making up for much of what would otherwise be paid CEO or separate managerial/specialist expertise roles. My own (inadequately informed) view is that in the long term the MEA will likely have to revisit the question of where the burdens of its work falls between volunteer and paid professional.

It's a truism that 'you get what you pay for' and while volunteer orgs can punch way above their weight (SfME !!!) providing long term professional quality services and/or advocacy in the face of increasing demand or changing social and political environments usually requires paid professionals.

*heroically so !
 
Sorting through some paperwork I found a fundraising letter from AfME back in October 2006.
In it, it mentions their survey 'Facts and figures' that states

"The statistics suggest that of the 240,000 people in Britain who have M.E., 55,000 of you are so severely affected by the illness that you are either bed-bound or house-bound. Many of you are in pain, too ill to visit doctors or hospitals. Some of you are unable to feed yourselves and have to be tube-fed".

I have not looked directly at the report but there is the 25% figure for those bed-bound or house-bound, and the use of 'many' rather than the constant use of 'some'.

This was around the time of the Gibson Report.

According to this letter, AfME were
"Early this month we are bringing together international researchers from a broad range of specialisms for a Research Summit on M.E.
Neurologists, immunologists and physiologists feature prominently amongst those who are attending. The event will allow researchers to develop suggestions for biomedical pilot studies - projects which have a real chance of being developed into quality research proposals for submission to the Medical Research Council.
We need your help to make it happen. We need funds to kick-start these pilot studies."

Does anyone know who attended this event, what happened, and where did the money go?
 
Sly Saint said:
Sorting through some paperwork I found a fundraising letter from AfME back in October 2006.
In it, it mentions their survey 'Facts and figures' that states

"The statistics suggest that of the 240,000 people in Britain who have M.E., 55,000 of you are so severely affected by the illness that you are either bed-bound or house-bound. Many of you are in pain, too ill to visit doctors or hospitals. Some of you are unable to feed yourselves and have to be tube-fed".

I have not looked directly at the report but there is the 25% figure for those bed-bound or house-bound, and the use of 'many' rather than the constant use of 'some'.

This was around the time of the Gibson Report.

According to this letter, AfME were
"Early this month we are bringing together international researchers from a broad range of specialisms for a Research Summit on M.E.
Neurologists, immunologists and physiologists feature prominently amongst those who are attending. The event will allow researchers to develop suggestions for biomedical pilot studies - projects which have a real chance of being developed into quality research proposals for submission to the Medical Research Council.
We need your help to make it happen. We need funds to kick-start these pilot studies."

Does anyone know who attended this event, what happened, and where did the money go?
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This afaik was the joint conference with the Medical research council. The beginning of the collaborations. I cannot find much about it only reference to it. There used to be stuff online Indicatting there’d been concerns regarding transparency but i can’t find it. Following this, the m.e expert group was set up by the Medical research council who Decided to take 3 years to workshop priorities (edit added this) and came up with 6 , including "pain" and "fatigue" that could have been jotted down in 30 minutes.
 
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