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I am pleased to say that the relapse was short-lived. I had a great night's sleep and woke up this morning and guess what.....the tremors I had been having for the last few weeks have all gone! So this has now made me re-think what ME actually is and isn't. For one, it can't be organ pathology...

I didn't know LC could have these symptoms. Thanks for letting me know.

thanks Kitty

I have relapsed with ME after 15 years of remission and it has come back in the form of tremor and myoclonic jerks at night. It gets worse as I start to nod off to sleep. That is when the jerk happens and I wake up. I also can't get REM sleep as my sleep is out of whack. ANyone else get these...

https://me-pedia.org/wiki/Mestinon Gulf War Illness Pyridostigmine was given to Gulf War personnel to protect them from nerve gas.[17][18] Dr Robert Haley reportedly found that pyridostigmine is involved in two of the three syndromes of Gulf War Illness. He reported that the nerve...

Merged thread The big news that OMF said they would disclose today is their LIFT trial which is a trial to see if Pyridostigmine (mestinon) and/or LDN improves some symptoms of ME/CFS. https://www.omf.ngo/lift-trial/

I don't think so as otherwise it would be easy to identify the virus in the blood. my serology was all negative when I first had Me/CFS.

OMG 15 million. god these scientists are onto a good thing. In my next life I will become a scientist not a concert pianist (maybe not as I like being a concert pianist lol)

I had a lot of fatigue when I was ill with Me/CFS. PEM was moderate for me and lasted a few hours.

I see the ME Association say that dorsal root ganglionitis has been found in people with ME. I think sophia Mirza had it. could this be the sole cause of ME and its symptoms?

what do you mean?

Thanks for the comments. I do wonder why I went a bit mad at 44 years of age (I am ok now) and not in my youth if I have a distinct independent illness called BD. I would have thought that I would have had BD earlier but then I just don't know. I am fine now (at the moment at least).

Has anyone got or had bipolar disorder or a neurophychiatric disorder? If so, do you think your ME/CFS caused it? I had paranoid thoughts and some hallucinations around 10 years ago (20 years after getting ME/CFS) and diagnosed with BD. I often wonder if it was caused by the ME/CFS or is...

Merged thread Is ME Non-paralytic Polio? According to Dr Byron Hyde, ME is nonparalytic polio. I have read his book Understanding ME. It does explain the epidemic form of ME I suppose. Whether I believe him though or not idk.

Do you mean keeping B12 and ferritin in the ranges you quoted helps your ME/CFS?

moved posts what about this definition of ME:

if you had to guess or say what you think causes ME/CFS from your experience, what would you say it is? I would guess it is a metabolic/hormonal cause somewhere. Now you. what do you guess/say?

hi everyone. I just read your posts. So I think I will ask my GP about this tinnitus, which is less severe now than a few weeks ago. However, I do not feel the aripiprizole did anything much so I have stopped it now. I used to get a lot of tinnitus when I first got PVFS in the 90s but it...

sorry it is aripiprazole I think. Misspelt it first lol

Merged thread Tinnitus treatment I had PVFS in 1992 and kind of recovered 16 years later. Now, about ten years since recovering I suddenly woke up the other night with a loud tinnitus in my right side on my head/ear. It is constant. I am trying apripirazole which is an antipsychotic and I...