Reddit - Interesting posts on Reddit, including what some doctors say about ME/CFS

Perhaps something of a tangent, but I sometimes feel a frustration that my ME has in a sense given me a lot of time, whilst simultaneously removing my ability to constructively make use of that time.

The World’s greatest mystics might envy the enforced inactivity of severe ME as an opportunity to achieve profound meditative states or to realise significant insights into the nature of ourselves or of reality. However for me the best I seem to ever achieve is on a good day sufficient equanimity to get through that day.

Where are the internationally significant ME poets, or the short but inspirational ecstatic devotional texts by ME mystics?

I suppose survival is in itself an achievement, as many of us survive years of what, if it was imposed on us by a malicious external human agency, would be regarded as torture.
 
Last edited:
Can we learn from the Philokalia, the writings of the early Desert Fathers, who in the extreme isolated themselves for decades in caves or in the case of St. Simon Stylites on top of a column of rock, or from Buddhist writings such as the Dhammapada or the Songs of Milarepa who spent so long in his Tibetan cave living on nettles that he turned green?

These are people who in their own way changed the World by actively seeking out what for many with ME is their daily reality.
 
Peter Trewhitt said:
Where are the internationally significant ME poets, or the short but inspirational ecstatic devotional texts by ME mystics?

I suppose survival is in itself an achievement, as many of us survive years of what, if it was imposed on us by a malicious external human agency, would be regarded as torture.
Click to expand...
Interesting philosophical questions. There are people with other illnesses or injuries who may be able to be productive in their free time, but cognitive PEM basically renders our suffering more "unproductive"/infertile than most. So we suffer uselessly and for no reason.
 
Last edited by a moderator:
Peter Trewhitt said:
Perhaps something of a tangent, but I sometimes feel a frustration that my ME has in a sense given me a lot of time, whilst simultaneously removing my ability to constructively make use of that time.

The World’s greatest mystics might envy the enforced inactivity of severe ME as an opportunity to achieve profound meditative states or to realise significant insights into the nature of ourselves or of reality. However for me the best I seem to ever achieve is on a good day sufficient equanimity to get through that day.

Where are the internationally significant ME poets, or the short but inspirational ecstatic devotional texts by ME mystics?

I suppose survival is in itself an achievement, as many of us survive years of what, if it was imposed on us by a malicious external human agency, would be regarded as torture.
Click to expand...


@Peter Trewhitt - thank you, Peter for putting into words the paradox of time for pwME. Outsiders view us as having lots of time to do whatever we want. In many instances, we neither have the physical energy, nor cognitive abilities to achieve even small tasks. Participating in this blog is often a Herculean feat for myself, and I'm sure others. One may want to say one's piece, or feel they have something vital to point out, but this may be at the cost of feeling worse after with increased symptoms of orthostatic intolerance which if I'm not mistaken affects over 90% of persons with ME:https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-019-1935-y
 
An additional comment re participating in this forum: for myself, and I'm sure many others, due to the severe isolating nature of ME (the very debilitating symptoms), as well as the disdain, dismissal and downright nastiness from those who do not, and will not understand this disease, some of us converse online. Without this, and other forums, life with ME is even less bearable.
 
I've seen far worse discussion but frankly the information level is so low this may as well be a discussion over the politics of immigration, emotions and beliefs far outweigh actual facts.

Because what is lost in this mindless discussion over its root cause is the fact that nothing is being done to help us, deliberately. That's the ethical lapse here and it is unrelated to the cause, other than the fact that the BPS approach has been tried and failed, of course.

People keep saying more research is needed because that's what the people who built their career on more useless research say it, unaware this has been THE paradigm in practice for 2 decades. But we have almost no information about real-life outcomes since nobody's checking, least of all the people who invented the BPS paradigm. So it's both researched enough to be used in practice, just don't check or cherry-pick all the things, but also needs more research. All versions of reality are true, people can bicker until the heat death of the universe.

Brilliant of Sharpe and his colleagues to keep the discussion alive over this useless split. Monstrous and with horrific human toll, but it's very good for their career, until everything falls apart anyway. But at this rate they will be long dead before reality catches up to the monstrosity they created. Death escapes punishment to those who lived their lives having neither morals nor conscience. Bit weird to be so careless about one's legacy but, hey, to each their own.
 
From the moderation team:
Many of the comments about people with ME/CFS on Reddit are ill informed and unkind, and may cause distress. We recommend that you consider whether the benefits from reading them outweigh the negative personal impact.
[edited for clarity]

Reddit thread headed:
What is the deal with all the h-EDS, chronic fatigue syndrome, IBS, MCAS bullshit?
Code: 
https://www.reddit.com/r/Residency/comments/13b7l45/
 
Last edited by a moderator:
So much ignorance and confusion in that thread. The bit that worries me most is the references to TPN. I'm in UK and listen to US patients with ME/POTS/MCAS/EDS etc and they do seem to have far, far more tests and treatments going on than anything anyone can access in the UK. I've been quite surprised by the reasons some of them go to ER, they'd certainly be rudely dismissed here - first thing most of us have learned with ME in the UK is don't go to hospital, and don't go near an ER unless your situation is broken bones, or bleeding out? The thought there might be some help out there gets well beaten out of us fast. But TPN is a different matter- we can get life-threatening malnutrition in Very Severe ME and the risks of infection v. malnutrition have to be balanced. It's so dangerous that they are missing that understanding.
 
You must log in or register to reply here.
Back
Top Bottom