Virtual workshop Beyond the Symptom: The Biology of Fatigue

I wasn't sure which forum to post this to.

From: NIH MECFS Information List <
Sent: Friday 20 August 2021 18:42
To: NIH-MECFS_INFORMATIONatLIST.NIH.GOV
Subject: Registration is open for the virtual workshop Beyond the Symptom: The Biology of Fatigue

Registration is now open for the virtual workshop Beyond the Symptom: The Biology of Fatigue that will take place on September 27-28, 2021. This is a joint workshop organized by the Sleep Research Society and the Neurobiology of Fatigue Working Group of the NIH Blueprint Neuroscience Research Program, with support from the Blueprint Neuroscience Research Program. The workshop will be held via Zoom webinar from 10:00 am to 6:00 pm Eastern time on both days.


Please go to this link for more information about the workshop and to register to attend: Beyond the Symptom: The Biology of Fatigue https://web.cvent.com/event/4630788d-baa2-47fb-af01-0f5b8d0d92bd/summary


Please distribute this email to your colleagues and others who may be interested in attending the workshop.

 

Bumping this thread to remind anyone who wants to register for the 2-day NIH webinar scheduled for Sept. 27-28.

Registration is required but I didn't see any fee when I went to the registration page.

No idea whether it will be any good, but here's the agenda (PDF) -

 

Registered & will take in some of the ME related sessions. No registration fee or issue registering as a patient.

 

This is happening now.

 

This motivated me to think about what I actually believe about fatigue. So here is what I think:

There seem to be different kinds of fatigue (which implies that there will continue to be confusion and little progress until we can better distinguish between different kinds of fatigue).

Fatigue in chronic illness is different from fatigue arising from normal daily activities. When I became ill it was something I had not felt before.

The apparent biological purpose of fatigue seems to be to force the person to do less. That I think means the body is sensing an illness, and the best way to treat fatigue would be to treat the illness the body is responding to.

There seems to be no good reason to believe that fatigue arises from a faulty perception.

Severe fatigue is experienced as more a kind of paralysis and inability to get one's body to function. It's similar to the brief inability to function that occurs in a person that has just awoken from sleep. Until they have fully woken up they cannot properly use their body.

Fatigue in chronic illness tends to occurs with other unpleasant symptoms (since it seems to be a "do less and rest more" signal). I've experienced relatively pure fatigue, and fatigue that was very unpleasant and obviously not just fatigue but difficult to describe more precisely.

 

One speaker now saying behavioural approaches work for fatigue while other kinds of interventios do not. She appears unaware of the methodological problems of behavioural intervention studies.

 

Fascinating presentation by Craig Heller of how exercise performance is limited by heat production of the muscles, how human hands are designed to cool blood, and how cooling the hands allows athletes to train harder and improve their performance.

Edit: he goes on to explain how heat can cause fatigue - by acting on the energy production system in cells, forcing adaptation which results in higher lactate production.

He says normally fatigue is adaptive. When looking for causes of fatigue in disease, consider problems with energy production.

 

I don't think the PACE'ites argue that ME/CFS patients have faulty perceptions about their fatigue. Their argument is that pwME are deconditioned, which leads to genuine perceptions of fatigue. But pwME's perceptions of why they experience fatigue is what BPS people argue is flawed - arguing that pwME's perceptions of what their illness is, is what is flawed.

Although of course the CBT thing then reckons it can help with how people deal with pain, fatigue etc. That may actually be true, in that for any illness it may be possible to help people better cope with pain, fatigue, any form of discomfort in fact. But coping mechanisms are a different thing.

 

I find that interesting because temperature is very often the limiting factor for power in many machines.

 

Definitely! I'm once again wrangling with the problem of explaining to a GP that I can clearly differentiate between ME and non-ME fatigue, as one fluctuates hour to hour, and the other is less severe but much more constant. The are other differences, too, but I haven't found a way to put them into words.

Guess what: people don't believe it's possible to tell.

 

I actually quite like 'normal' non-ME fatigue. It doesn't make me feel ill, just really tired.

 

Just to be awkward, here is a question, which I appreciate may be impossible to answer.

Thinking just about the fatigue aspect of ME/CFS, not the other symptoms, do you think the fatigue of ME/CFS:

1. Is completely different to normal healthy fatigue? Nothing in common with it at all?
2. Includes all the sensations of normal healthy fatigue, but with more sensations on top of that?
3. Includes some, but not all, the sensations of normal healthy fatigue, but with more sensations on top of that?

Not asking to pinpoint what those sensations are.

 

My SARS-CoV-2 vaccination caused fatigue but it was different from that normally caused by my chronic illness. It was pure and not especially unpleasant, just inconvenient. In contrast my usual fatigue is unpleasant.

Going back to the topic of heat and fatigue, when the summer heat arrives I tend to crash for a few weeks, but then the body adapts and the following weeks are often the best ones of the whole year in terms of function and quality of life. If I knew why this happened it might be possible to maintain this state of high functioning.

 

Fatigue is abnormal, so I'm not really sure how to answer – fatigue is usually only associated with illness, and unlike tiredness, doesn't resolve with sleep.

The only types of fatigue I've experienced are the sort you get with ME or with a virus or other acute illness; and the sort you get with an autoimmune condition, like my psoriatic arthritis.

ME and acute illness fatigue can be fairly similar in my experience, though one type may be more or less severe than the other, depending on where you are in the illness cycle.

The fatigue in untreated psoriatic arthritis is markedly different: it doesn't fluctuate, it isn't accompanied by 'flu-type symptoms, minor exertion doesn't make it worse*, there's no "warm-up" effect where you can sometimes push through it and (temporarily) feel much better, and it never reaches a crunch point where you can simply no longer continue moving. I'd describe it as having to carry additional weight at all times, or suddenly being 20 years older – nothing's impossible, it's just a lot harder than it was.


ETA: * by this, I mean the fatigue itself doesn't get worse with exertion, but also, it doesn't seem to accumulate from day to day in the way it does in ME. It's quite tricky to explain!

 

Just an FYI - the presentations are being recorded and will be available later.

 

Which is at the heart of why it is so easy for pseudo-scientists to abuse how they presume to measure it.

Maybe vaguely akin to the feeling you get a few seconds after getting out of a swimming pool, but worse and unremitting?

 

Not quite that bad! I was hoisted out of a swimming pool a few hours ago, and I'd say it's much less than the weight you feel when your weak legs are suddenly re-exposed to gravity.

If you've ever been a pool swimmer, you'll know the difference between training in shallow water of around 1.5m with a few other people, and in a deep pool (2.5m+) when every lane has 6 or 8 swimmers. In the latter conditions there's much more water movement, which can throw your balance, rhythm, and breathing a bit, especially when you're not hugely strong. Your stroke efficiency isn't as good, so it's harder work...that's kind of how I felt before the treatment started to reduce the inflammation.

It's how I feel again now with something else going on, though heaven only knows what. I have to see a GP tomorrow with whom I struggled to communicate by phone, so who knows whether I'll be much the wiser afterwards!

 

Ron Davis is now saying that in those with the genetic susceptibility for the metabolic trap, having low iron might be what makes the difference between developing ME/CFS and not.

https://twitter.com/user/status/1442585827217838091


I found that interesting because I was treated for low iron a few years into the illness.

 

Is the BH4 pathway not the shortcut to methionine if MTHFR is compromised ? I have a dull memory of something like this when i looked at methylation aeons ago.

If true, Low iron may be a factor in adolescent cases as its seemingly common in teenagers perhaps as requirenents for it , b12 and other cofactors for development are ramped up during puberty.

Heme is also a key component in mitochondrial respiration. ( from memory ) and plays a key role in signalling for oxphos

From memory there are Heme subunits in mitochondrial oxphos subunits II to IV which may be interesting as units I and V have been shown to be over and underregulated in a compensatory way . ..... don't know of this is of any significance.

EtA . Heme synthesis and signalling seems to be important in certain kinds of cancer too - there have been comparisons previously re cellular impacts of cancer and ME cellular issues.