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I am severe level pretty much bed bound though I do go out and walk from front door to car and out the other side to visit local family or for medical appointments I used to go out occasionally for walks but can’t do that anymore. I also have hired mobility scooters. This is better for PEM than...

I second this request for any recommendations or advice on wined around type? I will wrap up my whole body spa treatments style if necessary. I am absolutely desperate not to feel like I will going to puke every time I stand/sit up.

Thanks all you lovely people! I really need to hear this information. I had some questions already in my mind and answers here have helped clarify but also stuff I’d never thought of like how to balance batteries etc thanks @Kitty and @yME!

It’s just rude isn’t it?

A fine moment @ 0:24:20

Thank you @lunarainbows. Kind of you to explain this so carefully. I am sorry you have so much to contend with but glad a few treatments are adding up to a little reduction in symptoms and hopefully this can be built on as your Drs understanding of your particular circumstances improves. I...

Thanks @lunarainbows. Good info. Did you find it helpful before for OTI in terms of symptoms? I guess for heart failure it is crucial to maintain health and so it would be less about symptoms than function? I hope your recovery is going as well possible and you’re still feeling a bit better.

Do you have to have heart failure to be prescribed this or are there other approved use’s?

Just like that I experience a rise, a heave and a :emoji_fire: in the far back of my throat . So mine too I guess. Do you think we better alert him to this new and contradictory evidence? Could be statistically significant.

As far as I am aware celebrities getting ill with ME or CFS have said that they were less ready to talk about this condition than others that they have because the stigma applied would negatively affect their chances to get work. Being either treatable or fit enough to crack on with a show no...

“In fibromyalgia, central sensitization is a key mechanism” Is it? “repetitive transcranial magnetic stimulation (rTMS) has been reported to potentially manage symptoms of fibromyalgia.” By whom?

I am very confident this will go well funding and enjoyment wise, with all the factors & actors involved. Incidents of individual good outcome do happen. I feel optimistic. The occasional good public coverage around this disease always seems to bring out the swift backlash. So I am feeling...

We don’t know with much specificity individual health details are not usually publicly available and there is no broad collection of numbers of premature deaths for people with ME. A political decision not to record information on living or dying patients with ME diagnosis. Yet I and I think...

“I need to be very clear: vaccines alone will not get any country out of this crisis. Countries can and must prevent the spread of Omicron with measures that work today. It’s not vaccines instead of masks, it’s not vaccines instead of distancing, it’s not vaccines instead of ventilation or hand...

:unsure:

Oh wow. That hits hard. Sound from this like some really solid journalism?

Thanks for sharing @Lucibee I will add it to my list looks very interesting. I don’t have the ability to read this article now, so below comments not specific to this. It feels to me from a stand point of mostly unintentional observation just stumbling onto bits and pieces of information...

I agree. It is an event full of potential. I am sure that it will help Hal. It is likely to have some significant wider impacts too. I would disagree that the story ends there. I guess I personally didn’t and don’t yet feel able to contemplate this stage of the tale alone. The set up for this...

Yeah. I overall wasn’t as clear as I would of liked to of been, definitely not as concise. As I mentioned I find it emotional when people have a benefit concert (or any organised event) for their friends or people they don’t know, it’s a really kind hearted thing to do. What I do find gross is...

That was quite an emotional read. Such a perfect description.