Guide: Involving People with ME and Other Energy Limiting Conditions, by the World ME Alliance

Andy

Andy

Retired committee member
The World ME Alliance, a global coalition of organisations advocating for those affected by Myalgic Encephalomyelitis (ME), is proud to announce the release of a new guide. This comprehensive resource, titled “Involving People with ME and Other Energy Limiting Conditions,” aims to promote inclusivity and empower individuals facing these debilitating illnesses. The guide is now available in both English and French, with plans for additional translations in the near future.

https://worldmealliance.org/2023/07...with-me-and-other-energy-limiting-conditions/
 
Generally good.

A couple of oddities: it says that some pwME may be allergic to dairy, gluten, or nuts, so check beforehand. That’s certainly good advice for event organisers, as those allergies are reasonably commonplace, but AFAIK they are hardly ME specific.

And the advice for event organisers considering that 25% of us are bedbound or housebound is to hold hybrid online/in-person events. Personally, I find that trying to follow the in-room conversation when dialled into a hybrid meeting is horrendous, and pretty much guarantees a crash afterwards. When I was still working, I flat out refused to join hybrid meetings, and always pushed for online-only, which I’d say represents a much better accommodation for the housebound.
 
Agreed on hybrid meetings. Unless everyone is wearing a headset and the meeting is disciplined with no talking over or side chat it is very difficult to follow. The people in the room have to behave as if they were all on a zoom.

also just because someone can manage travel doesn’t mean it’s not exhausting so fully online must be the most ethical approach to avoid placing excessive expectations on pwme.
 
If it was patient centric it would say online as default, the approach taken of breaking a one day event into 3 zoom meetings over 2 weeks by the James Lind Alliance meant that no one had to travel so no additional energy over and above the actual participation, and no financial costs.

I understand perfectly the issues having worked remotely on a team based around the country for 8 years. And there are genuine benefits from getting people together in one place.

But that isn’t the case for many people with ME even if able to travel the negatives outweigh the positives. If there is any travelling to be done it should be the healthy people who travel. If researchers need to talk in the same room with PWME find the ones near by and go to them.
 
We need improved access to university-level courses in order to be able to study - the current requirement to study minimum half-f/t hours per week is completely impractical for those who are severe, even those who are moderate, and online study is usually essential, otherwise we're burning up energy travelling we need to use to study.
 
AknaMontes said:
We need improved access to university-level courses in order to be able to study - the current requirement to study minimum half-f/t hours per week is completely impractical for those who are severe, even those who are moderate, and online study is usually essential, otherwise we're burning up energy travelling we need to use to study.
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In the UK there's the option of the Open University where you do all your study at home. I did one and a half degrees that way spread over about 15 years, but you do need to be able to keep up with deadlines with a bit of leeway on getting extensions. In the end I had to stop because even with a single subject that was a quarter of a year's full time work, I couldn't meet the deadlines.
 
Trish said:
In the UK there's the option of the Open University where you do all your study at home. I did one and a half degrees that way spread over about 15 years, but you do need to be able to keep up with deadlines with a bit of leeway on getting extensions. In the end I had to stop because even with a single subject that was a quarter of a year's full time work, I couldn't meet the deadlines.
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If I recall correctly, in recent years the Open University say people need to finish their degrees within 6 years which is like a minimum of half-time.
 
Some good ideas. But I think if I was presenting it to someone, I would present it as ideas rather than all of them being essential. I think it would be hard to have all requirements in some scenarios and might put some people off trying to make accommodations at all if they were required to do all of them.
 
Dolphin said:
If I recall correctly, in recent years the Open University say people need to finish their degrees within 6 years which is like a minimum of half-time.
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That's a great pity, and I think discriminatory against people with disabilities that don't allow them to do the equivalent of at least half a full time load every year for 6 years. Mine took me much longer with some years doing a quarter year module and some years I couldn't manage any study on top of working, raising kids and having mild ME. I think the change was dictated by government policy.
 
Trish said:
That's a great pity, and I think discriminatory against people with disabilities that don't allow them to do the equivalent of at least half a full time load every year for 6 years. Mine took me much longer with some years doing a quarter year module and some years I couldn't manage any study on top of working, raising kids and having mild ME. I think the change was dictated by government policy.
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I think part of the justification of it if I recall correctly was that it was hard for them to keep track of the different modules and with new courses coming online, that they would fit in with existing courses without duplication and the like.
 
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