#MECFS is such a punishing & invisible illness which has nothing to do with fatigue. It’s a neuro-immuno-MEtabolic systemic dysfunction. It takes so much fortitude, endurance and courage to survive 24/7 on the edge of an abyss. We #PwME are reverse marathoners. - ThreadSky

valebodi.bsky.social • 53 days ago

#MECFS is such a punishing & invisible illness which has nothing to do with fatigue. It’s a neuro-immuno-MEtabolic systemic dysfunction. It takes so much fortitude, endurance and courage to survive 24/7 on the edge of an abyss. We #PwME are reverse marathoners.

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blueforpwme.bsky.social•31 days ago

Hi, @valebodi.bsky.social
I’ve just made a request under your post on X to ask whether I could use a screenshot of this message above in my next article? Wld be used in B&W

P2 will be more focused on comparisons with the book ‘Wintering’ by Katherine May&talking more about PEM/PENE / PESE 🩵🦋🩵

valebodi.bsky.social•53 days ago

The fact and reality for us #pwME is that there is no real rest, not in the sense of physiological replenishing of energy that can be achieved by healthy bodies or the majority of people affected by other diseases. Our bodies struggle to produce energy, energy is needed even to relax, rest & heal.

valebodi.bsky.social•53 days ago

True rest is associated with being tired/fatigued, in its essence it means that you can & will recover energy & stamina. But when you have ME your immuno MEtabolic system is profoundly broken, you cannot really rest, what you have to do is take forced breaks to palliate the ongoing damage. #MECFS

valebodi.bsky.social•53 days ago

And the different levels of severity of ME/CFS mean that you may reach the point of being barely alive inside a body that cannot cope with speaking, being exposed to light, touch, sounds, eating etc etc etc and that is #SevereME, the most neglected group of patients in the history of medicine.

valebodi.bsky.social•31 days ago

📌

eleanorsews.bsky.social•30 days ago

Lots of illnesses leave people feeling as though they’re suffocating inside a failing body but I think the worst aspect of #ME is to be suffering so much+THEN to be given disabling advice that can also kill you
Discovering care+support have vanished +been replaced with abuse+neglect is terrifying

maggieboxey.bsky.social•52 days ago

I went from running marathons to feeling like I ran a marathon from…existing in bed.

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