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Hi Duncan I don’t know about POTs as I’m not really sure I fit the criteria but, from what you say, I do think it would be worth looking into the possibility of Hashimotos. Antibodies plus raised TSH= autoimmune thyroiditis. In my experience of being hypothyroid and having had raised thyroid...

Glad you’re ok @dangermouse- that all sounds a bit scary! I also get migraines and one of my concerns is that HRT will make them worse. I currently take topirimate which has its own problems but reduces the migraine frequency and intensity. One difficult aspect of my own decision with HRT is...

I tend to get hot rather than cold when I’m in PEM but I just mention that I’ve had chills as you describe when my ferritin levels are low, just in case that’s a possible factor for you

Thank you all for your replies. Forgive me for not replying or quoting in my reply here- I’m just not up to it cognitively. Some things to clarify:- My GP didn’t think the suspected osteoarthritis was linked to menopause. I had a telephone appointment regarding specific pain in my left hand...

So my GP was convinced I had osteo-arthritis. Then when the x-rays have come back clear she’s wondering if It might be worth trying HRT, particularly as I’ve had a big increase in pain over last few years. She basically thinks menopause can be a big factor in some cases of ME/CFS. I’m 54 and...

I think it would be helpful to know how people with ME have fared after vaccination. My daughter told me she had heard that people with ME had got ‘flares’ with the vaccine, but I brushed it off. I’ve had flu jabs with no ill effects before. I had the Astra Zeneca vaccine 1st dose last weekend...

I’m not really posting for discussion but more for information as I don’t think people know about it. We certainly didn’t. My daughter just found out that unpaid carers are now in Group 6 for the Covid 19 vaccination. Only your GP won’t know you’re a carer unless you notify them. My daughter...

Have you looked at Bulk Powders? I know from memory they do broccoli powder and other green powders quite cheaply. I’m not sure if they are organic. Don’t know if it help but I freeze organic spinach to add to smoothies. You can buy it frozen but it’s not as nice. I read somewhere that freezing...

Some did some didn’t; I think there is a survey of some sort going in which will report back in a week or two. I didn’t test until late on (5 or 6 weeks) and it came back negative. From what I understand it was too late to expect a positive result by that stage.

The test was Abbott- through a private postal company that does finger prick tests. Results came back very quickly. The day I sent mine back the UK government ordered that all these tests be paused but I still got my results back the next day. All the people on the Body Politic forum have had...

Don’t know if this should be in a separate thread but.. I recently tested negative for covid antibodies. Im pretty sure I’ve had had the long tail version of it so am pretty annoyed to go through all that and not even got any antibodies out of it! I’ve seen on Body Politic that a significant...

Thanks Trish. That is a really sensible idea and I probably would do if I hadn’t been having almost weekly calls to the GP with these ongoing COVID symptoms. I also ended up going by ambulance to A and E at the weekend as I spoke to NHS 111 for advice on worsening chest pain and breathlessness...

Many thanks for this- I went vegan about a year or more ago and haven’t remembered to take b12 for quite a while now so that would explain it. I’ll hit the b12 and repeat in a few months. That’s really helpful thank you ETA practically zero alcohol consumption for several years and...

A little help please if anybody has seen similar to this. I recently got a private finger prick blood test for rheumatoid factor, which included a full blood count. Results came back with some abnormalities with recommendation to discuss with my doctor, only I have complete doctor burn out...

From my own personal experience I think it’s to early to talk about it being post viral. What’s interesting is it’s making me re-think the whole concept of ‘post viral’. And I think this may help the medical community re- think it too. People with protracted covid are forming their own support...

Hi Justy So sorry to hear you are so up against it right now. I do hope you start to feel a bit better soon. It’s horrible isn’t it? I’ve had to give up on Slack; I just can’t keep up! There is something else that you and me have in common with our illnesses but I can’t quite remember what...

Thank you, that’s very kind. This is starting to feel like a new normal but I’m still not as bad as I could be I have joined a forum called Slack which is shocking in the number of people flowing in with tales of being weeks to months in to COVID illness. Apologies if Slack is already...

Agree so much with this. I am around 8 weeks in after what was a mild case of unconfirmed corona and there is something very much ‘live’ about my continuing symptoms, rather than post viral. I am also experiencing a marked increase in my ME symptoms, which is, I think, what could be causing...

I’ve just been telling my daughter that having ME doesn’t make me any more at risk from corona virus than anybody else. It doesn’t affect my immunity (except maybe in a good way). Now I’ve been thinking I don’t actually know that for sure. Does anybody else have any idea? Apologies if it’s...

I know you say you don't want to focus on personal experience but... I have been struggling with this as an over riding symptom for about a year now. My ME/CFS is 7 years duration and I don't remember noticing it before. However I have had years of throat/ear niggles preceding my ME. A GP once...