Study offers clues as to how exhaustion could ari... - PMRGCAuk

PMRGCAuk

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Study offers clues as to how exhaustion could arise in people with ME/CFS—and potentially other conditions (like PMR/GCA?)

LIVEORDIEHEREIAM profile image

Interesting paper.

science.org/content/article...

People living with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) struggle not only with extreme exhaustion and the cognitive problems known as brain fog, but with a profound lack of information about what causes their symptoms and how to treat them. Scientists have yet to pin down the biology underlying the condition, which affects up to 2.5 million people in the United States alone, according to some estimates.

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LIVEORDIEHEREIAM profile image
LIVEORDIEHEREIAM
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10 Replies

There may be less of the deathly fatigue and brain fog one day if this flies!

agingfeminist profile image
agingfeminist in reply toLIVEORDIEHEREIAM

much of the deathly fatigue PMR sufferers have is due to adrenal insufficiency , a different problem. I am not sure that this interesting research really has much relevance in PMR.

PMRpro profile image
PMRproAmbassador in reply toagingfeminist

The fatigue in early PMR can be overwhelming - and that certainly isn't due to poor adrenal function. I have said for years that the mitochondria are involved in PMR but at the time any studies would have had to be done on muscle biopsies and it isn't easy to pesuade people to offer them! One day it will be easier and less painful ...

agingfeminist profile image
agingfeminist in reply toPMRpro

Thanks for this reply. It just reinforces how different our experiences of PMR are. I was totally immobilized but experienced no fatigue until low pred. I think you posted somewhere else that you thought PMR was an umbrella term for a range of diseases.

I think I may have confused muscle fatigue with general totally debilitating fatigue. Certainly muscle fatigue for all of us could be mitochondrial in origin.

I guess i am just obsessed by adrenal fatigue at the moment...

PEC2 profile image
PEC2 in reply toPMRpro

PMR Pro, your comment regarding the relationship between PMR and mitochondria sparked a memory for me. I am 68. In my 30's I was doing a treadmill test re asthma (very mild) and collapsed rather quickly when the ramped up speed in treadmill. They immediately drew blood and I cannot recall what they were looking for but I ended up in a.study at the University where they were in fact looking at mitochondria function. They took a small piece of muscle and found that indeed the oxygen in my.blood was not getting to mitochondria effectively. Here I am in year 3 of PMR. I am not sure where the study went.

PMRpro profile image
PMRproAmbassador in reply toPEC2

Now that would be interesting if they published.

sferios profile image
sferios in reply toPMRpro

During my latest flare, the fatigue (and general sick feeling) was worse than anything. But here's my question . . .

If I had terrible fatigue on 15 mg of pred, could that really be poor adrenal functioning? I thought once you get above 7.5 mg pred, you are taking more than the biological equivalent of cortisol anyway and your adrenals are shut down anyway.

If I am taking such a high dose of pred and am *still* experiencing fatigue, how can the fatigue be a result of poor adrenal functioning, when nobody's adrenals are working at that dose?

PMRpro profile image
PMRproAmbassador in reply tosferios

It is unlikely it was an adrenal problem - a replacement dose for adrenal failure is 5 to 8mg pred a day. The body doesn't care where its corticosteroid comes from, whether it is the natural cortisol or an artificial replacement. But fatigue is also part of all autoimmune disease and some people find they develop fatigue as a side effect of taking pred. There are no simple black or white answers to this.

If you go to the FAQs there are a few articles there about adrenal function that may help you understand better.

PMRpro profile image
PMRproAmbassador

It is all very well establishing the cause being mitochondrial - I have said that is where it lodges for years, latterly my husband worked in that area, but the next question is how can you rectify that.

Yes, where will it lead to, is the next question. We can only hope that there will follow-up soon! Thanks for looking!

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