Some videos about various topics concerning ME collected by a member

This is a general thread for the discussion of videos related to ME. Both good and bad videos are to be included.

I'll start with a positive:

https://www.youtube.com/watch?v=RC9TjgE_PlU

Notice at 2m47s - He says ME crashes can be permanent which is very relevant to me since I've become 100% bedbound due to doctors, friends, family not believing exercise and exertion can cause damage. @8:09 he says that only 5% make a full recovery.

I look forward to seeing your discussion and videos you've found.

 

There's also a thread of ME videos in the Science Library:
https://www.s4me.info/threads/me-videos.1030/

 

I find it difficult to watch videos, but this one was said to be really good so I gave it a try. It was stunning to me to hear a doctor talking about ME in the same way as other diseases. It felt so relevant, not the way I am used to "experts" talking about an illness totally different from what I suffer from.

ME is just another illness, why is that so hard to understand? The reports, in the 90s was it, spoke about it being a strange illness which lay in the middle ground between the physical and the psychological, all to lay the groundwork for the takeover by BPS.

Just another illness, not a voodoo land, not a mysterious thing, not hysteria, not a sin, just something going wrong in the way bodies work.

 

https://www.youtube.com/watch?v=w9gLhNO3LIw

@1:55 Esther Crawley says "...there's good evidence for CBT in paediatric CFS". What evidence is she referring to? Also why are the comments disabled, are they afraid of descenting opinions?

You can discuss this video on this thread

 

https://www.youtube.com/watch?v=IyJ31Ojqafs

I replied on YouTube with:
@10:48 "resistance to the diagnosis is about the stigma". This is a strawman argument against ME patients who suffer worsening of symptoms (in some cases permanently) from exercise or exertion. Under a psychological model worsening of symptoms are not believed by doctors, friends, family, and employers. As a result patients are treated unfairly, are given the wrong advice, and in some cases have their disability made permanently worse. There have even been cases of patients being forcibly sent to mental institutions and children with ME being taken away from their parents. Suzanne O'Sullivan dedicated a chapter in her book (It's All in Your Head: True Stories of Imaginary Illness) to ME which she claims is psychosomatic.

You can discuss this video on this thread

 

https://www.youtube.com/watch?v=1kEBGfQ1DhM

 

https://www.youtube.com/watch?v=WgORG0MRGHQ

From the OMF. @2:38 Where are they getting the 17,000,000 figure from? What criteria is it based on?

It's good that they are showing very severe ME patients like me.

 

The worldwide estimate of 17 million cases seems to come from applying Jason's prevalence value (422 per 100,000 adults) to the adult world population (over 18) between 2002-2004. The adult world population has grown since then, so it would've been close to 21.6 million cases in 2018 (maybe 24 million today), and that, again, is just the adult cases. If you apply the same prevalence rate to the entire world population - adults and younger - based on the 2018 population - you'd get close to 31 million cases.

ETA: Jason used the 1994 "Fukuda" criteria, but his group did a lot of screening of the participants to rule out other possible causes of their fatigue. Jason's 1999 study was carried out from 1995-1998, which explains why he used the 1994 definition and not the CCC (2003) or the ICC (2011). They randomly called about 29,000 Chicago households and about 19,000 completed the initial interview.

 

https://www.youtube.com/watch?v=02TUcGqTFAI

 

https://www.youtube.com/watch?v=CY71-qeT5p8

They say ME is exercise intolerance which is great to hear.

 

https://www.youtube.com/watch?v=TGIo1v7KVJQ

Difference between fatigue and PEM.

 

https://www.youtube.com/watch?v=5QggxcOKm18

This is a long video about the scandal of ME. It's in Norwegian but has English subtitles.

 

https://www.youtube.com/watch?v=dxmvRj9nvY0