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Responding to a deleted post: I entirely accept that there are specific ways in which women have it worse, and that there are different dynamics for women who are chronically ill. However, there are specfic dynamics to how the expectation and performance of masculinity play out among men that...

While I don't want to diminish anything that women go through, my experience has been that the minute you express what doctors consider undue concern about your health, or suffer from an affliction they cannot immediately diagnose, you lose a good proportion of whatever privilege being a man...

I've just seen this comment. Apologies for making you explain again in the other thread! What is it about the immunology that makes the responses look real?

The fact that they decided on these drugs after a year of deliberation is a scathing indictment of the NIH. How is it possible that they chose one drug that we know barely helps if it helps at all, a fad drug being touted as a cure all for everything, and a poorly evidenced and risky treatment...

Interesting, thanks for taking the time to explain that again.

@Jonathan Edwards i just followed the link posted above on this thread through into this other thread and stumbled across this comment from several months ago - am I right in understanding that what you said then is the opposite of your position now - that you now think the inhibitory effect on...

It is a spectacular own goal. And handy for us as an illustration of their utter uselessness.

One of the most powerful arguments that convinced me my doctor was right about my illness being psychogenic (obviously he was wrong) was that I didn't want to be one of 'those' people. And yet my doctors were wrong and my faith in them and the scientific establishment was shattered. Medical...

The idea that JAK STAT inhibitors could be beneficial for ME/LC is not exclusive to Ron Davis' group, or a pharma conspiracy. Iirc JE et al. even suggested them as one of the possible treatments in their hypothesis paper. Whether they work or not, we'll have to wait and see.

The juxtaposition of these two headlines says everything that needs to be said about the psychobehavioral school.

I do sort of resent this idea that we as pwME have to be perfect like this. I understand why, but outside of the scientific advocacy we do on here I think it is too much of an ask. The vultures will descend to pick apart what we say no matter if we're perfect or not. Look at what they've said...

Ok, maybe. But it's a very fine line to walk.

This was my experience too.

When you talk like this you disregard the lived experience of everyone whose lives were destroyed by worsening from exercise. Listening to people is not lowering the standards. If no-one had listened to pwME there would not be a single study happening anywhere. If you can acknowledge PEM from...

I know we are playing it uber cautious here, and I get that you are trying to make a point but I do find people taking this line concerning and wrong headed, frankly. We will never be able to do a trial on this. It isn't ethical. There are countless accounts of deterioration from exercise. Yes...

I didn't know that, it sounds like a better bet in that case.

To clarify I will be emailing the fundraising bloke at the Norwegian ME Association. This sounds like it would be better put to Fluge and Mella directly. I don't know if this guy will be the best person to ask. It's a good idea but iirc Kholsa has mostly invested in viral persistance studies...

Just to add to this, I did a bit of research the other day to refresh my memory. The questionaire was the COMPASS-31. And there were participants on reddit and in a private lc group im a member of saying they went from having heart rates shoot up from 60ish to 160 on tilt tests to not being...

But if the evidence is not detectable with avaliable technologies as ME/CFS currently isn't, then unless you hit on something by happenstance like Fluge and Mella did then you need to go hypothesis first.

It's good that they've done this so quickly. I still intend to email them, this weekend was a busy one for me so hopefully in the next few days. I think it may be best for someone else to contact them regarding the payments issue as I cannot quite get my head around what I need to say there...