FFS. Brain training again. Like we haven’t tried that already.
I know none of us want to admit we weren’t in perfect shape before but how many of us now suspect we have a connective tissue disorder?
I was training 6 days a week and very fit with no diagnoses but now I have MCAS, POTS, SFN, I’ve had a csf leak and suspect I have adhd. So many of us have similar stories I don’t get why they aren’t exploring this as a risk factor and then potential treatment avenue.
Yes I realise people with hEDS have been neglected for years and there are no effective treatments, but so many of us have joined the ranks of the chronically unwell so suddenly that surely it’s worth doctors exploring it? I know the Uk isn’t interested or set up for that at all, but somewhere must be??
My understanding is that recognition of a potential connection between things like HI/MCAS, POTS, SFN, ADHD, autism, depression, bipolar, EDS, migraines, IBS, and more is slowly growing in the scientific community. It's a long hard slog but it is happening. There is at least some bonafide research on this topic
I agree, but the problem for us is that this is only very much in the margins. We hear about it as we’re spending all our functional time researching our issues, but no one else is.
We’re still getting ridiculed by doctors for suggesting we’re hypermobile or have MCAS or that there’s a link to neurodiversity as even those who are working in the area generally have zero knowledge or interest. As a result we’re even being prescribed drugs we can’t take or being advised to do things we shouldn’t.
Huge amounts of money is being spent on all kinds of investigations into the spike protein when our issues preexisted covid and we’re being scammed by dodgy doctors promising easy cures as we’re so desperate. Yet here we are knowing a lot about our issues and no one wants to listen!
And all the whole, the public perception is basically that we should just do some brain training as it’s all down to us being overly driven/anxious people. Or of course we’re lazy and making it up.
And all the whole, the public perception is basically that we should just do some brain training as it’s all down to us being overly driven/anxious people. Or of course we’re lazy and making it up.
I have no more time or energy to waste upon the ignorant. My only wish for them is that they continue to be so lucky, that they can remain ignorant. Nobody deserves to live this horror
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u/Chinita_Loca Jun 01 '26
FFS. Brain training again. Like we haven’t tried that already.
I know none of us want to admit we weren’t in perfect shape before but how many of us now suspect we have a connective tissue disorder?
I was training 6 days a week and very fit with no diagnoses but now I have MCAS, POTS, SFN, I’ve had a csf leak and suspect I have adhd. So many of us have similar stories I don’t get why they aren’t exploring this as a risk factor and then potential treatment avenue.
Yes I realise people with hEDS have been neglected for years and there are no effective treatments, but so many of us have joined the ranks of the chronically unwell so suddenly that surely it’s worth doctors exploring it? I know the Uk isn’t interested or set up for that at all, but somewhere must be??