Trial By Error: Professor Jonathan Edwards’ View of ME (includes discussion of exercise and long-term harm)

[Snow Leopard]

No, it's from Paul Fisher's team in Monash - his team member Daniel Missaildis was the lead author.
An Isolated Complex V Inefficiency and Dysregulated Mitochondrial Function in Immortalized Lymphocytes from ME/CFS Patients Missailidis et al. 2019

Interesting, but I think you said it best:

The lymphoblasts from the patients and controls are a long way removed from the serum that they would have been in when in vivo.

The metabolism of lymphocytes themselves can be quite different to the muscle too.

 

[Barry]

This is an interesting discussion. The difference in the analogy between a car and a body is there would be several types of engine all working together in the body.

Yes, I'm keenly aware that in a person there will be multiple types of energy conversion going on, in some sort of 'energy chain', whereas for a car it is primarily chemical to heat energy conversion.

 

[JemPD]

I think even our CFS-friendly researchers are losing sight of this critical point. Most of them appear to be studying 'tiredness' rather than why we feel sick.

Yes, I couldn't agree more. I feel quite desperate about it sometimes. I keep saying it but I feel like i'm 'shouting into the wind' sometimes. But lots of people with ME/CFS dx will then say they do feel overwhelmingly tired, & seem quite happy to use the term 'fatigue', so the point seems to get lost or considered unimportant.

ps, I love your avatar name

 

[Kitty]

But lots of people with ME/CFS dx will then say they do feel overwhelmingly tired, & seem quite happy to use the term 'fatigue', so the point seems to get lost or considered unimportant.

In the early stages of PEM I have the opposite to fatigue. I feel 'wired', I have to pee every half hour, and I'm constantly throwing off and pulling back on blankets or clothes because I can't regulate my temperature. It's impossible to rest, let alone sleep. The fatigue only arrives when the immune flare is fading.

 

[MSEsperanza]

I think it's helpful to be aware that many pwME don't seem to experience PEM (only) as worsening of daily symptoms, but (also) as another category of symptoms.

Also, I think, if differentiated from general fatigue, specific fatiguability can be a useful term for some symptoms occuring before PEM hits.

I tried to describe this here:
https://www.s4me.info/threads/is-me-a-metabolic-problem-or-a-signalling-problem.10981/#post-196018

Edited to add: If I try to push through muscle stiffness, motor or cognitive fatiguability, sometimes funny things happen, and sometimes not so funny things; e.g. it's not unlikely that I escaped a fire by falling down the stairway.

 

[Art Vandelay]

Yes, I couldn't agree more. I feel quite desperate about it sometimes. I keep saying it but I feel like i'm 'shouting into the wind' sometimes. But lots of people with ME/CFS dx will then say they do feel overwhelmingly tired, & seem quite happy to use the term 'fatigue', so the point seems to get lost or considered unimportant.

I'm exactly the same. Whenever a new study comes out, I often find myself yelling "STOP STUDYING FATIGUE!". I believe that a lot of 'CFS' research will prove to be a waste of time and funds because the 'illness' they're researching only exists in the minds of the scientific and medical community. Their idea of ME/CFS does not reflect what we are really suffering.

I have been guilty of telling people that I'm "tired" when I'm in the middle of a crash. I think I do it because "tired" is a one syllable word that does not require any extra explanation for a healthy person to understand. When we try to explain that we're "sick", there always seems to be a need for justification or further detailed explanation. These days however, I force myself to say I'm sick.

ps, I love your avatar name

Thanks! I can identify with George as both our lives have turned out to be more disappointing than we thought they would

 

[Amw66]

In the early stages of PEM I have the opposite to fatigue. I feel 'wired', I have to pee every half hour, and I'm constantly throwing off and pulling back on blankets or clothes because I can't regulate my temperature. It's impossible to rest, let alone sleep. The fatigue only arrives when the immune flare is fading.

this