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It may have to do with your blood glucose levels in the same ways that diabetics feel if they have a high carb meal. You may be able to process small amounts especially if your meal consists of both carbs and proteins. If you have access to a glucometer, you may want to test that hypothesis...

Such a sad story, and a despicable message on twitter from Vogt. There are no words.

Anybody noticed Buchwald in there, the Seattle psychologizer and epidemiologist, also much involved in pelvic pain research and the ‘all in your head’ connection?

I was too... what’s up with that? Let me sleep already! Then when i call i want breakfast in bed.

Then this was not a sleep study, it was sleep torture :banghead:

Mutations in CYB561 Causing a Novel Orthostatic Hypotension Syndrome Abstract: Rationale: Orthostatic hypotension is a common clinical problem, but the underlying mechanisms have not been fully delineated. Objective: We describe two families, with four patients in total, suffering from...

A sleep study like the one I had happens in a sleep lab, you are wired from all over and they measure your oxygen saturation, respiratory rate, heart rate, and brain waves. They can also tell what position you sleep in, and even if someone says they never sleep on their back, everybody move in...

I believe the presenter said in a month or so

For a brief moment Dr Montoya expressed his desire to have a clinical trial with Tofacitinib. I forgot his reasoning but you can find out about the drug here

It’s back on with questions and answers

Anybody lost the stream just a couple minutes ago and can’t get back in?

A very sympathetic piece towards living with a disability, featuring amongst other a patient with ME and calling it myalgic encephalomyelitis. http://www.washingtonpost.com/sf/local/2018/01/10/for-some-receiving-disability-benefits-the-desire-to-work-will-never-cease/?utm_term=.3c33bec6f9ab

Hello @MErmaid this thread has left me thinking and contemplating both your post and @Jonathan Edwards answers. I am thankful for his willingness to share his thoughts and experience and for engaging with the patients in a forum setting. I appreciate your determination and I encourage you to...

Good luck @Wonko! Best wishes!

What i would like is a scooter with a snowshoe attachment, so I can visit the snow when I want to :cool:

Autoimmunity is a broad term, meaning that the body’s immune system is attacking its own cells or organs. For instance, type 1 diabetes is an autoimmune disease attacking the endocrine part of the pancreas. Here is wikipedia’s definition of autoimmunity: By all means continue to read the wiki...

The question you ask pertains to metabolism and basal metabolism, how much energy each one of us require to maintain basic body functions. This may be independant to the pathology that we have.

Indeed, the Rituximab trial authors will likely conclude in their scientific publication that Rituximab is not an effective treatment for ME. There are dozens and dozens of targeted therapy (biologics, or monoclonal antibodies, all synonyms) which could be possible treatments, if only we had...

Hi @Mattie glad you found great use of this scooter to accompany your wife outside. This option would certainly attract those who have a milder disease. Personally I would find having to keep the balance a bit difficult and energy sapping. Then there is the need to lift up your knees and then...

@Allele yes, it’s great to have an extra option that doesn’t suck all of your energy. Being able to get out is good for the soul, even if it’s for a few minutes. I am not sure where you are located, but if you are not quite sure what to purchase, some medical supplies stores will loan you a...