Hospital Care Plan for Severe-Very Severe ME/CFS and long COVID (and associated conditions, e.g.: dysautonomia) (ME Respite & ANZMES)

[Dolphin]

Hospital Care Plan for Severe-Very Severe ME/CFS and long COVID (and associated conditions, e.g.: dysautonomia)

https://anzmes.org.nz/wp-content/uploads/2025/07/Hospital-Care-Plan-for-Severe-Very-Severe-ME_CFS-and-long-COVID-1.pdf

 

[Utsikt]

Briefly skimming it, I noticed a lot of unfounded statements about pathology and comorbidities. There’s talk of how ME/CFS might present with 100-200 symptoms and is highly individual.

It also seems like it might be too long and some of the headings are misleading. The section about low-stimuli environment and limiting interactions etc. is named «Creating an Environment for Validation and Empathy».

There are useful bits that can be reused in a revised version.

 

[Jonathan Edwards]

I am unclear on a brief skimming who this is intended for. It seems to try to put too much in to one document - with different material potentially being aimed at different people. There is a lot of unnecessary material about speculated pathologies and problems. As it is I think it will put health professionals off quite quickly and they will ignore it. That would be a pity because there are a lot of elements that are relevant to simple practical matters.

 

[Hutan]

There is a lot of unnecessary material about speculated pathologies and problems. As it is I think it will put health professionals off quite quickly and they will ignore it.

Unfortunately, this is standard from ANZMES. Fiona Charlton who leads ANZMES was one of the authors of a recent paper that wrecked what could have been good basic information about what we know about number of people affected in New Zealand and services available by adding in a whole lot of unfounded conjecture. She has been told by a number of people that she is not helping ME/CFS advocacy by being so certain about things, but she seems very confident in her knowledge.

ME Respite is a nice charity trying to do good things, trying to make places for people with severe ME/CFS to get care.

 

[Sean]

With friends like these...

 

[Ravn]

I am unclear on a brief skimming who this is intended for. It seems to try to put too much in to one document - with different material potentially being aimed at different people. There is a lot of unnecessary material about speculated pathologies and problems. As it is I think it will put health professionals off quite quickly and they will ignore it. That would be a pity because there are a lot of elements that are relevant to simple practical matters.

That about sums it up. They do cite your Qeios piece (thread) multiple times so there's that

 

[hotblack]

Unfortunately, this is standard from ANZMES

Is there any way they may be open to a refined edited down version?

 

[bicentennial]

Is there any way they may be open to a refined edited down version?

Either way, lets do it.

There are several motley publications worth sieving though and filtering.