Search results

I am late to the party, but amen! to this:

She also says: They (the patients) risk too much treatment, stigmatisation and unnecessary assessments and procedures that may contain risks and seldom helps with their serious symptoms. We'd like this to change. The term newspeak from Orwell's 1984 comes to mind (particularly duckspeak..)

There is now a web page Bohne Askøy AS Life-long compensatory therapy targeting functioning of Pyruvate Dehydrogenase Complex It's in Norwegian only, but google translation should be easy to do. Ron Davis has agreed to read their first article about diagnostics, according to their Facebook...

Thanks for clearing that up, @inox That's something completely different, I agree. I'd only heard the facebook group version.

It is certainly uncomfortable to hear about, but I don't know if it is illegal. A couple of years ago there was a professor in sociology who did the same in a Facebook group for young ME patients. She used the group as material for her research without getting consent. I think she just got a...

Dear @andypants I don't think anyone is judging you and I think we all understand why you and others decided to try the treatment before RituxME was completed. I also understand those who criticise the doctor providing the treatment, but it would be very sad if that led to patients feeling...

Wasn't this dr. Kogelnik's promise a few years back when he initiated Rituximab treatments for ME patients? Does anyone know if he still is giving Rituximab treatment?

Today Aftenbladet follows up with even more articles where they have gone deeper into the subject. Dr. Øgreid at Kolibriklinikken says he has treated about 250 ME patients with the drug Rituximab, but that fewer people are coming now after the negative results of the large multi-center study...

The Norwegian region newspaper Stavanger Aftenblad has an article today about prof. Dagfinn Øgreid, the oncologist who has provided Rituximab treatment to ME patients at a private clinic. He is now under investigation from the Norwegian Board of Health Supervision for having prescribed...

I just saw Charles Shepherd's report from the Invest in ME-conference. Details from prof. Sommerfelt's talk are on page 5-6.

Up Close with Robert Phair, PhD On this #OMFScienceWednesday we introduce you to researcher Robert Phair, PhD, running the OMF-funded metabolic trap project. Today, Dr. Phair shares his personal connections and how he became a part of OMF’s End ME/CFS research project.

This is the only video of him I know about with English subtitles. But I don't remember if he mentions myoclonic jerks in this one :unsure: I can do a search later regarding publications, but brain too foggy now..

On May 12th, the Norwegian ME Association donated 250 000 NOK (3 1000 USD/23000 GBP) to dr. Øystein Fluge and his team and 50 000 NOK (6000 USD/4600 GBP) to prof. Kristian Sommerfelt. The money were officially handed over today at Haukeland university hospital. The local newspaper Bergens...

That it is a sign that the brain is involved in the disease (he says it more eloquently..)

In that case he is a professor and child neurologist and works at the children's ward at Haukeland University Hospital in Bergen, Norway and at the University in Bergen, just to give you some additional info. :) Edited to add: It would make sense if this is the guy. He often mentions myoclonic...

A newssite for research, Forskningno has an article today about possible wheat sensitivity in ME patients. (Study discussed at this forum in this thread) Forskningno: Hvete kan bety trøbbel for ME-pasienter google translation: Wheat can mean trouble for ME-patients

Great podcast episode (haven't listened to all episodes yet, but really liked those I have listened to so far). Thank you @Gary Burgess I so enjoy your posts here on the forum @Trish It was nice to hear your voice and get to know you a little more. I found myself nodding a lot while listening...

Thank you for this link. There has been a lot of rumours and secrecy about this - for years - and very difficult to form an opinion. Victoria Bohne used to work as a scientist for the salmon farming industry until she became ill with ME. She has treated a few ME patients and rumours have it...

haha.. oh dear, that's some typo. Well, good it made you smile :-)

Here is the facebook page to The Comeback Study, the ongoing Norwegian study on ME and feral transplant. It is in Norwegian, but I am sure if someone contacts them/ask questions in English, they'll reply in English.