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Hello, I have received another spit kit, though I sent mine back many months ago. I didn’t receive an email to say that it was received but recently had an email to tell me that a kit was on its way to me. I have emailed the DecodeME team to see what is going on.

Dear Gary, so very very sorry to hear you’re news. I will not forget all that you have done for our community, one of our hero’s. Kindest, best wishes to you and Alan. xx

This is very concerning. From what I’m seeing here and some awful testimonies what is MEA thinking?

Hi @Maria1 - thanks, I'm exhausted by it all but relieved to be home. I'm so sorry to hear that you get migraines too, they are really debilitating. I can understand your concerns, I am similar with medications and having to be careful what I take as I'm so sensitive. I had got to a point...

Just to update: I presented with TIA symptoms at hospital (sent to a special unit that bypasses a&e thanks to my GP! I had told him I couldn’t tolerate hospital a&e environment as ME is bad). Staff were really kind and nurses surprised by how bad ME can be. Just a bit disappointing that I...

Hi @Maria1 I started a trial of HRT three months ago and I have not experienced any improvement of pain. In fact I’ve had horrendous increases in pain recently. It improved insomnia and night sweats and dry skin which has been good. I’ve had to pause it yesterday due to possible side effects...

That link is very helpful thank you @lunarainbows

I am not well enough to be around the forum consistently and would like to thank you all very very much for this and everything that you do for the ME community. Thank you.

Huge thanks to all who have contributed and advocated for pwme. I’m not well so can’t be around much but I do appreciate everything you’ve all done and continue to do. Thank you.

Similar thing happened to me. A CFS clinic called it pacing but encouraged baseline to do no matter how ill I felt, then increase by ten percent every 2 weeks.

Very sad news.

Thanks. I just want to make sure I did it right and that any emails don’t go into spam etc. Some of my family members have registered to be part of the non ME group. I have told a friend with ME about it and shared. I did register on the original website but didn’t know it had changed, a...

I’ve registered, do you get a confirmation email? Just wondering.

Brilliant news. I’ve signed up. Thanks to everyone who made this happen.

I saw a thread on Twitter (but forget completely who it was by) that was a pwME who was sharing tips for living in isolation, it was really helpful and supportive.

I’ve had problems with writing for many years. I find it really embarrassing at times.

Just catching up .... congratulations & extremely well deserved. Well done.

I get migraines often. Long lasting. Always on left side with aura. The pain is in head, eye, sinuses, jaw, teeth, neck, shoulder and arm. I do feel heat on that side sometimes, not always. I find ice pack helps. But, short lived.

If only :whistle:

Surprise surprise. It just gets better. I should be shocked but I’m not, I’ve recently been offered hypnotherapy .. yup.