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I hope it stays this way and then goes away again!

Hey @Tilly I may have misunderstood, but if your work covers lots of people with EDS and or hyper mobility management and that condition is your area, can you recommend any reliable resources like books perhaps for me to learn about this from?

How are you feeling @Hoopoe ?

I don’t think FND is a process that exists outside of the researcher mind certainly not in the bodies and minds of their patients. So I don’t think Trans and gender non-conforming kids can be at risk from it anymore more than anyone else can. I do think it’s quite possible to stress a person so...

:cry:

Yes. Absolutely.

I love getting mine! I feel grand and generous. I always put these up on my lounge ledge, sometimes they send me two at once bonus, and every time I see one it makes me laugh. About how on my income a wealthy university is thanking me for my largesse and communicating optimism that I might...

Yes, I have. Pre-vaccine definitely and almost certainly after this several times. I can’t isolate. The one time I was able to during a period post my first and worst Covid case I felt much better with my ME due to total isolation from humans. No interaction other than phone. Emotionally it was...

Yes I am not at all confident that they’re going to help us out on this one. Me too! The flashing lights and overhead lighting, terrible. Unfortunately also day light 9am -6pm on a really glare-ish day, worse when there are clouds and bright white light, rather than pure sunshine. On days with...

Oh wow I am happy for you!!! Would I need to be under a neurologist to access this because I don’t see this being possible with out acquiring the unwelcome passenger of FND….?

It’s such a hazard isn’t it? I know that I can avoid this if I meditate for the few days that lead up to an appointment. I will not be deterred. Of course I can’t do this for almost all of my of my appointments I am too weakened sickened and utterly vulnerable.

Yes. I think the difficulty is when a sufferer feels better they will attribute that to a specific thing they tried, I think that’s fine. I think it’s unavoidable. At the level of individual experience it’s useful, at this stage nothing better is on offer. We have instincts about our own...

ps I believe long COVID is more deadly than M.E. as in it regularly kills people with little warning. Where as with M.E it’s more often medical denial of basic life saving care or that standard investigations were refused and then it’s too late. However because LC and ME fatalities are hard to...

It really is. I’m so sorry to hear it. The drs and nurses, who expect us to defer to their supposedly superior understanding of infectious disease and human biology? It’s beyond ridiculous and deep into tragedy. This is stuff they all knew but two years ago. Before the great forgetting...

Ophh….I’m sorry that happened to you. Spanner in the denial I guess?

I haven’t watched this video. But from all the others that I have watched, I do share your admiration and frustration. CS does seem to be describing the mildest possible manifestation of M.E. but without also describing that even mild M.E. will wipe you out if you try to move even a little way...

Yes, it is isn’t it?! I feel like this is an important avenue for study. I personally buy into it. Though I am sure there are other important factors also.

I was treated to very hostile manner by a nurse in A&E for reasons I couldn’t work out. One reason on my list of explanations is that I was wearing a mask. I was the only one in a very busy area. Maybe that wasn’t it. But since all Drs look shocked and taken aback when I walk in the room, always...

I have this exact experience!!! You described that relationship so well. It’s not pleasant is it….

:(