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At the beginning when JB recovered from surgery, I was optimistic that it would open the discussion and research concerning autonomic issues and M.E. But now it's taken on a whole new egoistic approach from her end.

@Sarah94 the fish I take is made up of "anchovy, sardines and/or mackerel". I think most of them are? I think I would avoid it altogether during the entire treatment and maybe take less after it's all over.

Fish oil is another one to avoid.

@Simone It says, "temporarily suspended to focus on other projects".

Yup, I stopped after 5 nights. I actually took it as a trial to help with sleep because some people told me it improved their sleep!

@Nellie the "chemical hits" symptoms (one sided sore gland under my ear) started 15 years into the illness. In the last few years I find that dust/allergens are causing the exact same symptoms. Kind of hard to avoid those!

I never got a cold or flu before I became ill with M.E. at age 28. Perhaps slow onset patients experienced more colds and flu? I had a sudden onset, I know the exact time I got ill one morning.

I'm guessing it's the referring doctors who determine the criteria for CFS and not the surgeons? How would a surgeon even begin to understand a patient with ME/CFS history when it's most likely the first or second time they've actually seen the patient?

I had a close neighbour friend who got polio as a child and had a relapse at age 42. She was walking down the street and lost muscle function in her legs and fell down. She eventually recovered, but it was quite a shock for her.

It would also be interesting to know the length of time these patients have been ill. My immune system has morphed over 30 years.

@Trish yes, exactly. The article also doesn't mention POTS, active viruses or any other comorbid conditions that Jeff and Jen recovered from. Or previous surgeries such as thyroid cancer or dental surgery that may have brought on their underlying 'instability' issues.

Translation from the link:

to add . . . I don't feel we have to handle JB with 'white gloves' when we disagree with her.

I'm wondering if it was the high sodium content from the pizza? I have recently started electrolytes drinks with BCCA after my power walks and finding improvements so far. I can be upright for longer periods.

I have not experienced PEM in over 3 years because I pace and know my limits, that's just me, but by no means is my PEM gone! PEM is not a 'feeling', nor is it a symptom.

I would like RD to explain his "accidental discovery" concerning a patient whose blood was tested on the nanoneedle. Did he follow up on this? What medications is she taking? Why wasn't she called back or asked to return to the genome centre for further testing? Seems significant, no?

@rvallee we have a thread here

@Sarah perhaps on twitter but not here on S4ME.

I don't see anyone putting JB down. She has every right to share her own personal experiences, but she is not the authority on M.E. and needs to be called out when she crosses the line.

I wonder if it helps the spin cycle? I have issues with vertigo when I sleep or move my head too fast.