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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Mrs Sowester

Mrs Sowester

Senior Member
Messages
1,055
Barry53 said:
No, I think you may be missing what is being said here. People in desperate situations, as so many PwME are, will and do say some pretty desperate stuff sometimes, that will no doubt get pretty bad sometimes. But there are others who go beyond that, and just get downright vile and deeply deeply abusive which normal people don't resort to no matter where they are at.
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ME doesn't discriminate, shitty people get it too.
That said, we're all lovely here on PR of course.
 
B

Barry53

Senior Member
Messages
2,391
Location
UK
Mrs Sowester said:
ME doesn't discriminate, shitty people get it too.
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Just like old age :). Which was why I soon learned to be very sceptical of being told to "respect your elders" when younger, 'cos some of them were the pits.
Mrs Sowester said:
That said, we're all lovely here on PR of course.
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Well ... the vast majority to be sure :D.
 
JoanDublin

JoanDublin

Senior Member
Messages
369
Location
Dublin, Ireland
Jonathan Edwards said:
Do you think this is an indirect effect of some general protection mechanism he has employed that has nothing to do with PWME in fact?
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I'm not sure I understand. On Twitter if you are 'blocked' then that means someone specifically went to your account and blocked you. The other general mechanism you can employ is to protect your account which means that only 'allowed followers' can see your tweets.

However In this case I'm firmly blocked it seems.

Perhaps I was tagged in something he was unhappy with or perhaps I retweeted something in which he was tagged and that led him to decide to block? Who knows? It's his perogative of course. I was just pointing out that I've never specifically interacted with him before so it's peculiar that he has blocked me. Ah well, it takes all sorts
 

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wdb

wdb

Senior Member
Messages
1,392
Location
London
JoanDublin said:
I'm not sure I understand. On Twitter if you are 'blocked' then that means someone specifically went to your account and blocked you. The other general mechanism you can employ is to protect your account which means that only 'allowed followers' can see your tweets.

However In this case I'm firmly blocked it seems.

Perhaps I was tagged in something he was unhappy with or perhaps I retweeted something in which he was tagged and that led him to decide to block? Who knows? It's his perogative of course. I was just pointing out that I've never specifically interacted with him before so it's peculiar that he has blocked me. Ah well, it takes all sorts
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You may have got on some block list that David subscribed to or there ways to block new accounts or accounts with a low follower counts e.g. https://blocktogether.org/
 
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Sean

Senior Member
Messages
7,378
Jonathan Edwards said:
The problem is that ME is very very difficult to crack. There are no leads of the sort there are with other diseases.
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I think we have some leads. A thorough assessment of PEM on as many different physiological measures as possible is where I would start.

I am pretty sure that what is lacking is not the basic technical means to measure the pathology, but the lack of a conceptual basis to target those measurements.

The old we-don't-know-what-it-is-that-we-don't-know problem.

I think more-or-less everything we currently 'know' about ME is the secondary stuff, meaning the body's reaction and adaption to underlying pathology.
 
alex3619

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Sean said:
The old we-don't-know-what-it-is-that-we-don't-know problem.

I think more-or-less everything we currently 'know' about ME is the secondary stuff, meaning the body's reaction and adaption to underlying pathology.
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Yes, unless we know something we don't fully understand the implications of.

Biomarkers are critical to advance research. Most of the scientists know that. It also does not matter if they are diagnostic or just pathology markers. Either will lead to advancements. In any case we have pathology markers before diagnostic ones. We have those right now, including cytokines and the two day CPET, but its important to recognize that both work well only under physiological challenge. We have to stop doing resting tests if we want to advance unless its something specific which does not require physiological challenge to patients.
 
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