Search results

but but but... Publish findings. N=1, is it reproducible? can you confirm that # 1 is still fully recovered, back to normal, able to work out and live a full life for at least 6 month?

Did you discuss this with AQEM? (Quebec ME organization)?

There is a Facebook group called Myalgic Encephalomyelitis Canada. Join and it will give you access to info and resources available, and you can start discussions if you do not find answers.

Proof of concept study is typically using low number of patients, use seed grants to fund the experiment and if the experiment is successful then the authors can apply for a larger grant to test their concept/experiment on a much larger number of patient and controls.

Honestly, and not related to this doctor, validation is a good mental health booster when someone face so much hostility at home in primary care. Secondly these doctors know how to explain the disabling aspect of the disease and help support the disability benefits that are so crucial for our...

I guess I will need trying again with recipes until I find something I like. I am not so attached to sourdough starter, don’t mind using commercial yeast and other leaveners, as long as it tastes and feels good. when the time is right I might just cave in and try a little bun and see what happens…

I am not buy ing 10-12 $ for a loaf of GF bread. Way too expensive. I actually did my own GF starter and made 2 loaves of GF sourdough with it and it was really disappointing. Buckwheat in bread was hard to palate for me…

In the last year till December, I made my own sourdough bread from my own starter. It meant that my bread’s ingredients were flours, water and salt. I LOVE bread! Then in December I had to go on a liquid diet for a few weeks which meant no bread at all. I do lactose free dairy.The minute I...

Merged thread Medscape: How to Fix $1.6 Billion Long COVID Program: Experts Weigh In This is an opinion piece regarding the long-Covid 1.6 billion investment in the US. The 4 headlines are something that the ME field should also follow. First Step: Improve Coordination Step Two: Move...

There has been an excessive interest to link ME to childhood trauma, to the point where British psychiatrists have made the rounds around the world and telling doctors that ME was due to childhood trauma. When I got sick and seeking out answers, one internist (specialist in internal medicine)...

What is *killing* me is just looking at the date this paper published, and look at the year range that was looked at, 2006-2017. One may argue that we may reach Pluto faster than this study.

one survey question that is highly suspect for pwME is "have you been abused as a child" It leads to researchers disbelieving the disease. The risk to patients is that the whole study will be focused on character traits and psychological aspects which can easily be magnified by the researcher...

Shame that it will take at the very least 12-18 months to find out whether they are standing by their product (their investment) or how much placebo effect there will be.

Thank you for keeping it real @Jonathan Edwards The last thing we need for this field is telling our doctors that pollution and environment is the cause of ME or suggesting to researchers that it is a good research lead. It would set us back yet again. There is some humility in saying ‘we...

Having worked in nursing for decades, the infusion pumps make noise that are noisier when they go faster. Also, a rate of 150 ml/ hr would be felt by the patient compared to a 20 ml per hour, in terms of pressure and feeling cold up the arm. 20 ml per hour is known as KVO (keep vein open)...

yes to all your post above but this certainly rings true here unfortunately.

While some of your study details cannot be shared, I'd like to comment that it could be hard to have a sham infusion when the liquid infused is usually cold and can be felt entering the vein. Also there is a percentage of the population that can taste the saline when it is initially infused, I...

I cannot see where the funding for this study came from. But the authors declare no conflicts of interest. Surely one of them has received funding from the pharma producing the blue pill at some time in their career, no?

I do have POTS. I assume I was already on Atenolol at the time it happened, early in my disease onset. POTS came in the package deal.

This may be a bit off topic but if you (or collaborators) are looking for research leads, I know of many, too many pwME that have a sensitivity to epinephrine. Understanding why would be a good study, because you can inject (just a bit ) epinephrine and observe the effects both as the patient...