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Based on my own experience of a sleep study (not ME specific), frankly I am not at all surprised. I arrived at the centre and told I had to be all connected up and in bed at a certain time - significantly earlier than my usual bedtime. A good hour earlier than that the lady who was to connect...

I tried to carry on looking at the pacing section. Way to seriously overcomplicate. This rule, that rule, the other rule.... At no point is there any appreciation of the fact the the same task can take different amounts of energy at a different time of day or on different days. At no point...

It was certainly bandied about when I first became ill. I wonder if there was a policy behind it, or if it was just seen as common sense advice that couldn't harm anyone. Like exercise. Then the BPS crew set about convincing everyone that we weren't credible witnesses to own condition and so...

She doesn't live nearby anymore. It was just that the opportunity arose at the time and I suddenly saw the opportunity to help someone else without clobbering myself. I'm not really well enough anymore to sustain real life friendships. :(

Yep, I get it on the hands and feet. It disappears for a while and then comes back again. Never seems to happen around the time of an appointment so I've never asked about it. Or if I have the answer wasn't memorable. As far as I can remember :arghh:

Yeah, this is a massive document @Action for M.E. .I'll try to dip in and out but.. There's no way I'm reading all of that. I've just dipped in - page 15 - mentions avoiding sleep during the day as it might disrupt sleep at night. For a good number of ME patients this is completely wrong...

Planet-struck - any sudden or severe paralysis

Apparently - Jawfaln = lockjaw Kings Evil = scrofula or tuberculosis of the neck and lymph glands Wolf = rapidly expanding growth or tumour. Definitions found here - http://www.homeoint.org/cazalet/oldnames.htm

[Bolding mine] So if the symptoms are medically explained - presumably in this case we're talking pain- we don't know the cause. So how can you know that you aren't making things worse for these patients? Speaking as someone who suffered for over 3 months with a shoulder injury thanks to a...

I prefer the credit card analogy myself where credit = energy. As long as I stay within my credit limits and pay it off in full (on a daily rather than monthly basis, mind you) I won't be making myself worse. If, however, I go over my limit and/or cannot make the payment in full (perhaps...

I've tried it. It's quite a fun experiment. Sat in front of a specialist who was spouting pure tripe straight from The BPS Guide to the Galaxy with the phrase Evidence Based Medicine sprinkled on top. Let him go for a bit and when he paused asked - "Whose evidence? Can you give me a list of...

Haven't read through your updated document yet but - I would also suggest extending that window the other way - for me PEM can take up to 72 hours (3 days) to appear. If I haven't suffered ill effects by then I've gotten away with it.

And if a wet behind the ears, freshly trained nurse could see that then everyone else could too. So what stops people from coming forward? Should there be penalties if they don't? (I'm not aiming those questions directly at you @Milo :)) I've worked in the same company as others doing the...

I think the get out clause there would be that the pharmacist should ask if you've ever used the drug before and you should receive a copy of the patient information leaflet with the prescription. I'm not saying that's necessarily enough, mind. Just that this is probably how they would cover...

Death by bureaucracy...... You really are a hero @Dx Revision Watch as is @Medfeb

My father was a big fan of salt water gargling. The nanosecond you thought you might be coming down with something out would come the salt.

My immune system is definitely not right, but I don't know that it's too strong or reactive or whether it's "low". I'm not sure what that means. If it comes up I tend to say my immune system doesn't seem to function normally.

:hug: @JellyBabyKid. I completely agree. GPs need to be properly educated about ME and I mean properly.educated not this MUS /IAPT shite. Most of them have zero concept of how much suffering is caused because, while they usually see patients when they're sick, they only see ME patients who...

Yeah, there was a documentary a few years ago in which the Mickel therapy featured. Nasim Marie Jafrie was in too (she wasn't supportive of Mickel but was giving general background). edit - link to MEA page about the documentary with links to it. The documentary itself is in two parts -...

It's not an online thing but at one point I had a neighbour from a large family with a couple of small kids of her own. One Christmas she was really stressed so I decided to give her the gift of some "time". I wrapped & labelled all her Christmas presents for her. I know that's a seasonal...