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I don't know if it's due to thyroid meds needing the odd tweak, OI or ME or a combination of all three but in hot weather my feet, ankles and calves swell and become very sore and tender. I wouldn't be prepared to wear anything on my legs when that's going in and it can go on for weeks or...

:hug: You're certainly not alone there. Hopefully your friend will start to feel a bit better soon & will appreciate your understanding. She might find this experience gives her a glimpse into how difficult your life is and maybe your friendship will be stronger because of it.

When it comes to spices and condiments I found it interesting that some do help with digestion. I love cheese and used to eat it a lot. Unfortunately, I seem to struggle digesting fats and, even before ME, would get tiny hard white lumps on my face when I ate too much cheese too often. Since...

I find if it's decent quality dark chocolate I am happier with a much smaller amount of it. When I look at the portion sizes that work best it seems to work out at about 120 calories or so a portion. Sometimes, especially if I haven't had any protein, I have been tempted to have a bit more...

A minor thing that makes a big difference and allows a whole lot of people to become involved who otherwise couldn't. This is what patient inclusion looks like and will hopefully set a good example for future projects. Well done. :thumbup:

My emergency foods are dark chocolate - at least 70% - I always have a bar of it in my bedside drawer (not on top as it is extremely poisonous to dogs). Very high in nutrients even if I can only have a small amount at a time. Dark choc digestives - combo of an instant boost from.the biscuit...

Where ai come from to "lamp" someone pretty much means to punch their lights out. So Yes, I would say way beyond parody, and a long way beyond the far side of mockery. This seems like clear discrimination against those whose pay packets are very slim. Just because people don't earn much it...

I agree. I also worry that not only could the gaslighting of some patients be continuing but that some of the patients may actually suffer the much greater harm of having their faith in their existing self developed management strategies undermined. So, not only are they facing a challenge to...

Because they don't ruddy well listen I expect. Every time a new doc realized my iron & ferritin stores were low they were Aha! We can fix that! Very common in women of menstruating age. When I pointed out I have tried virtually every iron supplement you can think of I was assured but this one...

I've struggled with anaemia on and off since I was a kid. Even without overt anaemia my HBC is at the very low end of "normal". My ferritin stores are always below normal. I have yet to find an iron supplement I can tolerate when taken as directed for more than a couple of weeks. Even if I...

I feel like I experience both reduced available energy and rapid fatigability. It seems the lower the available energy the less efficient my body is at using it and so the more rapid my fatigability is. or to look at it the other way around - he same task can feel like it requires significantly...

Yeah, I'm watching that amount anxiously too. Some of us spread the total amount we donate over a couple of small donations - in the UK benefits are paid fortnightly so that can spread the load a little- I hope to make a 2nd donation before the crowdfund ends. Maybe others will be doing that...

That sort of thing does happen, though. All the time. On multiple occasions in my life I have had relatively minor adverse reactions to medication, including it making the symptom I was prescribed it for worse, only to be blithely told that it's extremely unlikely and to carry on. I know from...

Of course there is a way. Design the d*** trials properly! An awful lot of lip service is going on about patient involvement and this is definitely somewhere we need to be involved. Keeping an eye on research proposals and trying to make sure they are properly designed and are ethical...

I've had abuse because of ME. I've had abuse because of CFS. Are either strictly accurate for what I personally suffer from? No, not to the best of my knowledge. The name is a problem because of how I'm treated. I can call it what I like but if doctors still call it what they call it and...

Yes. I suspect this may be the norm for them when dealing with those outside the inner circle. Those within the circle or who are deemed worthy of becoming members will be treated to a charm offensive.

I am.put in mind of one of Brian Hughes blogs where he talks about people chatting and making judgements based on how people seem to behave and react. The fact that we all do whether it's about politicians, celebrities or the neighbour. The problem, as he seemed to describe it, is the...

Ah, okay @Mij. So you see the attention problem in the current tense and the memory problem as the past tense (yesterday's attention problem)? Unfortunately, I think some of us have both. Naturally, if you're not paying attention you also won't remember but things I clearly got & understood...

And how long does the "recovery" last? What mechanisms are in place to determine if it is a "recovery" or merely a remission. Given we are still locked down and under fairly tight restriction can we really measure whether many of these people have recovered fully? We won't know until they are...

According to Garner- Indeed information -scary or otherwise - can have a big impact on patients. It gives them the tools to best manage their condition.