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Choirs are intolerable noise for me so I think I will pass. They cause me enough stress just having to hear them on TV occasionally.

I’m also very uncomfortable with this, especially given the false reputation ME/CFS patients have for being abusive and threatening. Demanding action in this way seems entirely inappropriate and I do believe this will make things worse than they already are. I sincerely hope I’m wrong as it...

Fully agree with this, I’m very worried by what I’ve seen.

Yes good point. I’m just hoping this signals a change but we will have to wait and see.

Hopefully this will help them improve on some of the dubious social media stories they have had recently

The font doesn’t help either I don’t think.

Am I alone in wondering if sending cards like this is a wise idea? Seems like it could play right in to the “abusive bullying patient” persona that the BPS crowd have created. Personally I think the responses to NICE that this forum has been writing have been much better, excellent in fact.

Ah I thought people meant replies that were anti ME/CFS but you mean tweets that just aren’t helpful to the cause. That makes more sense and yes I agree they aren’t helpful. I do have issues with ME actions style of advocacy but I agree that that is not the place to voice those concerns.

Maybe I’m just missing things but I don’t see any bad tweets replying to the NIH tweet?

I get these symptoms to some extent all the time but they get worse as I feel worse, quite often I just can’t use the computer because the motion makes me feel nauseas. Ive never tried medication for it as it comes and goes. The only things I can suggest are playing with accessibility settings...

Have you tried turning on night shift to reduce the blue light from the display? I find that helps me a little when my eyes are tired

It’s easy to imagine a dr asking a man if his symptoms could be caused by him having to give up his job though. It’s all the same stuff just slightly different things they focus the questions on. If there’s ever any evidence for men with ME being treated better than women with ME then I will...

I’m not well enough today to go into detail but I’m under no illusions of medicines being perfect, just that it’s the least bad option. I will just respectfully say I disagree.

I disagree. No system is perfect but there’s a big difference between licensed and unlicensed drugs.

Ah that would make sense

It’s completely different, doctors understand the risks vs rewards with licensed medicine. Chemotherapy has saved millions and cancer will almost certainly kill you without treatment of some kind, all of which have risks but are the best we have for now.

I remember seeing one doctor encouraging patients to make their own GcMAF to treat ME/CFS a few years ago, really worrying.

As a man with ME that has not been my experience at all. I suspect it’s more down to how good your GP is as to how how seriously you get taken, which would be a mostly random factor. However I also suspect it’s something that’s impossible to ever ‘prove’.

It was finally on the BBC 10pm news but no mentions during the day.

I keep meaning to buy a thermometer to see what my body temperature actually is. I feel extremely hot most of the time and my partner says I am like a heater with the amount of heat I radiate out. I wouldn’t be surprised if the thermometer said my temperature was normal or slightly lower though.