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I also don't think this potential for conflict of interest is that unusual. I know of several people whose employers sent them for assessment, with a view to treatment, to the rehab centre where they would be treated. Now, I'm not saying that the patient's interest always comes 2nd, but these...

I had a specialist A who was my ME specialist. My GP was concerned that some of my symptoms might be indicative of something else. He'd heard specialist B was good & wanted his opinion. I didn't find out until later specialist B, who was very unpleasant throughout the appointment and made...

My GP, with the best intentions, really wanted an opinion from a particular doc back when I was first diagnosed. I already had the diagnosis, thought it was probably right and reckoned my consultant was about as good as could be expected - at least I could trust him not to harm me. Anyway, for...

I would imagine it means being chastised, or gotten into trouble somehow. To take someone down usually means to topple them, maybe remove them from their position or simply win an argument against them. I think that tweet by Anna Batho is pretty damning of a profession that provides talking...

Mine don't fit very well either - I'm pretty sure it's down to me & not the headphones. I use one of those beautician style hairbands (with the velco?) folded over between the top of my head and the bit that rests on the top of the head. I look like a pillock but luckily I'm used to that &...

I have some OI symptoms - much worse when in PEM or in very hot weather.

I agree with the concerns listed. We simply don't know. I think as patients hampered & harmed by treatments based on very poor research we have a duty to point out the risks of other patient populations being put through similar treatments with similar underlying philosophies. As patients with...

I don't tweet & don't have the clarity to be clear and concise (as you already know :oops:) but if I did I would love to ask - is As @Art Vandelay says many of us don't recognize fatigue as one of our primary symptoms - certainly not fatigue as might have been experienced as part of our lives...

Yep, I wasn't too happy with that either.

I suffered from migraines long before I got ME. My ME started moderate and then slid to severe. At first I just thought the increased sensitivity was migraine related. As the gift that keeps on giving one of the other problems that occurred after I got ME is I became intolerant of the...

Yep, I get that extra need for water and thirst too. I have difficulty if I eat or drink too much liquid in one go but making sure I have a ½ glass of water when I rest seems to help. I suffer on and off with the frequent urination business. It is very annoying and just what you don't need...

Done

And that right there is why so many patients thought that PACE would finally put the argument to bed one way or the other. Of course, we naively thought that the researchers knew what they were doing and would act in good faith.....

I wonder if it irritates Prof Garner that the 5 Live tweet posted by @Dolphin says "how he's managing long-term fatigue as he recovers" ? Especially, when he has taken great care to point out what he is experiencing is not just fatigue. We know exactly how that feels, mate.

I listened for a couple of minutes and decided I had other things to do. I did listen long enough to notice that her wording was remarkably similar to the wording Phil Hammond used in his video. At least as I recall it - so maybe my dodgy memory. You know the bit where they answer why some...

All sorts of things. So, assuming the optimum dose is taken in the recommended way in the morning without eating or drinking anything but water 30 mins either side of the dose (caffeinated drinks are a particular problem) - Supplements - adding in too much iodine, developing low zinc or...

Nope. Not at all. We do all differ. I am also quite sensitive to dose changes - even tiny changes like going from 125mcg per day to adding in an extra 3 doses of 25 mcg over the space of a week. So instead of 875mcg spread over 7 days the dose is 950mcg over 7 days. I too tended to feel it...

I have always been told that is too soon. In my own experience, it probably is. Unless my symptoms are not easing after the 8 weeks mark then I find about 12 weeks is right for me (n=1). Yes, they do. Again my own n=1. If you increase the dose too fast then you find yourself in a situation...

It does strike me that NICE might be on a sticky wicket here. This is a virus we know little about,despite all the guff. NICE have been made aware that there is a large group of patients for whom exercise is not the answer & neither is CBT. The deniability window is shrinking.

My guess is at least some of those people this service is aimed at will already have automatically done 95% of the things they will be advised to do by the service. As those things didn't work for them, they need further help. They may go along waiting for the aha moment in the process that...