CBT for CFS Therapist Manual PAEDIATRIC CFS TEAM, ROYAL UNITED HOSPITAL, BATH, UK Loades, M.E. & Starbuck, J. | 2020

Post-exertional malaise; the fatigue is worsened after increased activity. This can show itself 1-2 days after the busy time and can take a few days to recover from.
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I have come across this before in BPS literature and it sounds very close to the delay we often get before PEM cuts in. Because I know what we mean it puzzled me.

I've just realised that unaccustomed exercise is worse 1 or 2 days later. Think digging over the garden on Sunday not able to move Monday. Of course, I never thought PEM was related to that sort of muscle damage. It is a normal response to exercise whereas we have an abnormal response.

Maybe we should emphasise that small movements can bring on PEM even when we can manage a one off large movement. Saying that we get it from minimal exercise will just convince them we are very deconditioned.
 
Snowdrop said:
For the past six months or so every new link I see come up I link it to the internet archive. Sometimes someone has beaten me to this other times I'm rewarded with a 'First Archive' button. I've also gone looking on occasion for old materials to archive, some of it thanks to people who link it here. Occasionally those yield a new link. I spent some time on Cochrane for a while doing this also.
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I've seen people talking about doing this in the past. I have a few questions about it.

1) How do people archive links, documents, and images in the internet archive?

2) Don't the owners of the material object to their stuff being archived by complete strangers unconnected to the original material?

3) How do people prevent their own stuff being archived by complete strangers?

4) Can stuff in the archive be deleted by the original owner or the person who archived it?
 
Arnie Pye said:
I've seen people talking about doing this in the past. I have a few questions about it.

1) How do people archive links, documents, and images in the internet archive?

2) Don't the owners of the material object to their stuff being archived by complete strangers unconnected to the original material?

3) How do people prevent their own stuff being archived by complete strangers?

4) Can stuff in the archive be deleted by the original owner or the person who archived it?
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web.archive.org has a 'save page' function.

Technically, you can write to them to have them take down your own copyrighted material. They also scan books for their free 'library', which is definitely breach of copyright, and I've written to them before to remove titles I hold the rights to (they did).

For the books, it's bang out of order. For websites, I think only a few people will care enough to get things taken down. Personally, I wouldn't bother, as it allows you to save websites and pages you don't want to keep or don't want to keep paying for.

ETA: I should add that normal libraries pay a licence every year, so authors get about £0.20 every time their book is borrowed from a library or photocopied. Internet Archive doesn't do that.
 
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Keela Too said:
I’m curious, why would the red arrows I’ve added, be omitted from the original?

View attachment 11966

Edit to add: Not that I think it makes the diagram any better, only that I thought the premise was that everything was connected, so why omit 2 connections?
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If you've tried putting a home made Covid mask on round your glasses, baseball cap and hearing aids you will know why those ones were omitted!
 
Interesting diagram. I know a little bit about how people might read visual shapes and composition (art training). It's interesting that 'Thoughts' and 'Feelings' occupy larger 'weightier' boxes at the bottom of the diagram, and 'Fatigue' is at the apex, and how the eye might be led around the image. It's just more natural to be impacted visually by those parts of the diagram, especially those bottom two boxes. I'm not suggesting that's intentional at all, though I find it ironic in a CBT manual.
 
Arnie Pye said:
I've seen people talking about doing this in the past. I have a few questions about it.

1) How do people archive links, documents, and images in the internet archive?

2) Don't the owners of the material object to their stuff being archived by complete strangers unconnected to the original material?

3) How do people prevent their own stuff being archived by complete strangers?

4) Can stuff in the archive be deleted by the original owner or the person who archived it?
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To me archiving isn't new, that's what a library is all about. So internet archive is just another way of capturing information for preservation for posterity. As more and more information is only online rather than in print, thoughts, opinions, POV, analysis are all in danger of being lost. I recognise that IA is not a total solution to anything but I do think it serves a useful purpose.

This post should in no way be construed as an answer in full. There is plenty to say on the subject and gray areas that may be an issue. Like so much that is new it is not all sorted.

Edit: fix typo
 
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The good news is that recovery rates from CFS/ME in young people are very good. A UK study looking at recovery found that approximately 60% of young people were recovered at 6 months after starting active CFS/ME treatment, and 85% of young people were recovered at 1 year after starting active treatment. This data can be compared to just an 8- 10% recovery rate for those who were not in active treatment, after 1 year
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Does anyone know what study they are referring to?
 
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