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This can happen to me but I think is more likely to happen when something else is going on. Thyroid or coming down with a cold or something. I find carb heavy meals can be a trigger and have adjusted how I eat to avoid it. Tiredness just doesn't cut it as a description for me. It's more a...

I've had the booster (Pfizer jab - 1st two were AZ). Headachy the following day but that's not exactly unusual. If anything I felt peculiarly well a few hours post jab and it took a lot self discipline to rest. They did keep me in the surgery for 30 minutes to make sure I didn't have a bad...

Judging be some.of the statements made after the new NICE guidelines were produced I think it's safe to say that some clinics were already playing a bit fast and loose with the old guidelines. There were no evidence of harms yet somehow they decided to evolve GET into something a different. No...

I always notify insurers about ME. They usually tell me it isn't relevant but I ask them to note I've told them just the same. It isn't obligatory to declare it for car insurance as far as I know but, if something happened unrelated to ME that resulted in a claim and them looking to see my...

There are two parliamentary petitions regarding the NHS in the twitter thread: Link to the petition- https://petition.parliament.uk/petitions/598732 And Link to that petition - https://petition.parliament.uk/petitions/592557

I loved yoga and used to practice regularly. As I gradually became more ill I adapted my practice somuch of It could be done lying or seated in the floor with lots of rests and recovery periods. Based on my n=1 experience I found that certain yoga positions wiped me out much more quickly than...

I believe so. I think the accusation was the number of claimants who were awarded the benefit that was targetted.

It does make you wonder about targets..... if there were an average number.of points per descriptor per claimant and they.needed to keep them down where possible. That's not necessarily the case, though I do believe there are other targets. Just my suspicious mind.

I sympathize with your experience @CRG. I think that's the difference for some of us. It's not just about the severity it's about the manageability. In the same way some people can't guarantee to physically manage to walk to the bathroom to brush their teeth two days in a row the way PEM...

I have my diagnosis in writing. By both an NHS consultant and also confirmed by a private consultant after the NHS one retired. Even with that the DWP tried to simply ignore the specialists. I simply got lucky that my brain decided to work on a day when I really needed it and when I actually...

One of the things that keeps me going is the thought that what we do won't just affect us but will improve health and social care for everyone. One day they might use the history of ME to highlight how readily establishment systems that are supposed to help can be subverted, whether by accident...

I went for a password with a mix of upper and lower case, more than 8 letters and avoided special characters as I thought that might be what those instructions meant. That worked. Edit - I used a number as well

Almost missed this one. Done. Thanks to whoever wrote the instructions. :thumbup:

Yeah, right Dr Phil, because the NHS is known to be open to complaints and criticism from patients. Given the patients are children and the families are so vulnerable to action from social services, do you really expect parents to risk sticking their heads above the parapet if they have the...

One of the things that strikes me about the diatribes against @Jonathan Edwards is that they seem to forget that JE has much experience as a clinician & not just as a researcher & so has just as much of an understanding about a therapeutic relationship with patients as they do. Another thing...

Yep. I would have been the same when I first became ill. Between a medical professional telking me I could get better, if I worked at it & was disciplined and believed vs a patient telling me this wasn't true, I would have avoided the patient and listened to the message I wanted to hear...

:laugh::rofl::rofl::rofl: That's priceless!

From a quote in @think_that_it_might post above. What about the issue that ME is a fluctuating condition? The word baseline assumes a static, unmoving level & that the patient will always be able to function above that level if they manage their condition. This is false because regardless of...

The conversation has probably moved on so please excuse me if this has already been said. Regarding some of statements on the new guideline written by the pro BPS crew - If they had already stopped following the old guidelines by using a different form of treatment and simply giving it the...

Sadly I've slowly deteriorated where I simply cannot do any kind of activity like this anymore. Anything that causes me to breathe more heavily and raise my heart rate flattens me. The odd thing is something I can't do today without pushing myself, I might comfortably do next week so it's not...