Search results

I understand Rob Wust frustration after reading a few responses. One response to Rob Wust, "Sir ,I MO it would be best to just say that you had a very bad day (a few of them) and that you are sorry that this influenced your reaction to people's suggestions, and that you are happy to...

"Please email my Austrian colleague and me during working hours, not during weekends. I am not going to have a discussion about this in public. Please stop this conversation"

Questionnaires about chronic illnesses are generally helpful for clinical care and management. I'm not so sure about research though? If it's poorly designed and interpreted in a biased way, it can be harmful to the patient.

"Dear OG, if you want to argue in public with scientist that are looking for a cure and treatment for your disease, it would be helpful to be supportive. Comments like these are extremely discouraging, and we will stop on Monday with research into ME/CFS if this continues. Danke"

My dear friend who passed away from ME/CFS complications had hypoperfusion on his first SPECT and PET scan. This is what got him disability benefits. When he was tested again years later, he no longer had hypoperfusion.

I went back to answer the questionnaire. I have emailed them with a simple explanation about my experience, and that how I am feeling on any particular day does not dictate the severity of delayed PEM when I go over my energy expenditure. I am mild/moderate and still experience severe...

Tulane University: "Tulane scientists uncover new pain-signaling switch" 'Researchers found that nerve cells communicate outside the cell with the enzyme vertebrate lonesome kinase (VLK), which can alter proteins in the space between neurons, affecting how those cells send signals. “This is...

A new clinical trial is set to test whether vaccination against a common virus found in almost all people with multiple sclerosis (MS) could help treat the condition. Take Part People taking part in the Horizon trial must be 18 to 55 years of age and have been diagnosed with MS in the past two...

I went to a walk-in pharmacy to get my flu and Covid vaccine and it was interesting that no one was asking for the Covid vaccine, they only wanted the flu shot. I considered not getting the Covid jab, but because I have several dental appointments I didn't want to take that risk.

This is dangerous advice imo. That bike brings back memories in the earlier years when it made me worse and I sold it to my homecare worker.

A woman who develops ME/CFS during the onset of menopause might not be able to distinguish menopause fatigue from ME/CFS fatigue both physically and cognitively. I think it would really muddle the waters for a woman who is trying to understand what is causing her symptoms. I remember during...

My condition does fluctuate, but my delayed PEM does not. It follows the same distinctive onset, symptom pattern, and duration for the last 25+ years not matter how good I feel. I have an energy limit/window and stay strictly within that window, but sometimes I don't feel too bad if I...

I've been doing really well the last 3-4 weeks, going out power walking every second day and I feel as though I didn't even exercise the next day. I'm going out shopping tomorrow while this good streak lasts. Who knows what next week will bring? It's not that straight forward for those...

Unfortunately, I'm unable to fill this form out based on 8 week 'crashes'. It doesn't apply to my disability. They are going to miss out on mild/moderate pwME who experience severe delayed PEM that pace to avoid it.

A thread was posted here

Ok, but my ME physician and GP both in practice for over 35 say yes. My ME doctor who has treated pwME insomnia for over 20 years and my GP over 35 years have had good experience with trazodone. I asked the pharmacist why they prescribed an anti-depressant for insomnia, and she told me...

I'm not sure what they mean by 'crash'?

Ask the pharmacists. They know best because they actually talk to patients who tell them that low dose trazodone works great short and long term. It's non-addictive with no withdrawal symptoms when you stop. That was the case for me.

My natural sleep came back again :) Initially he wanted me to take Imovane but it was expensive. My sister is a flight attendant and they all take Imovane (including pilots) for jet lag insomnina. You take it and wake up feeling completely fine and can drive a vehicle right away.

I took 25mg of trazodone for 2 years and it worked great for me. Sometimes I took 50mg. I got 5 1/2 hours of restorative sleep. I took the name brand Desyrel which was discontinued years ago. It worked much better than the generic trazodone. My doctor told that his patients told him...