• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Interview with Maria Gjerpe: Chronically Engaged - Following Ritux One year on...

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
From Tate Michell via Co-cure:

http://mariasmetode.no/wp-content/uploads/2014/03/BT_portrett_Kronisk-engasjert.pdf
http://mariasmetode.no/wp-content/uploads/2014/03/BT_portrett_Kronisk-engasjert_2.pdf

Bergens Tidende Wednesday 12 March 2014

STILL FRESH

One year after the recent ME cure at Haukeland Maria Gjerpe still fresh. Now she will develop new digital services for health care.

Chronically Engaged

KARI PEDERSEN
kari.pedersen@bt.no

You have been diagnosed with ME (Myalgic Encephalopathy) in several years. How are you now?

Apart from that I'm struggling with a cold, I feel fresh. Now it is exactly one year since I received the last dose. I'm even lucky that I have been headhunted for a new job as special adviser in the Directorate of Health. Where should I develop digital services on site Helsenorge.no. The key is e-health, which gives a whole new health landscape, where the patient is sitting in the driver's seat.

What is the concept of e-health?

Roughly speaking, it's about all the use of technological tools. It can range from an overview of their medicines, to book doctor's appointments and have dialogue with the doctor online.

You are an MD and experience as ME sick. Was it the doctor or the patient who was headhunted?

The unique combination, I think. The relationship between doctor and patient is also something I've written about both on my blog and in book form.

Is ME the same as chronic fatigue syndrome?

No, it's not the same. Chronic fatigue syndrome is a broad term, such as "stomach ache" is. ME is a disease diagnosis in the same manner as appendicitis. Historically, there has been a confusion between the various names and perception of the disease. That is why I raised money for research. I will have the knowledge and treatment, not just assumptions and stigma.

Through action MEandYou collected in the last year the 2.9 million kroner to ME research at Haukeland University Hospital. Are you watching what they do with the money you obtained?

Researchers have spent some time trying to tweak the protocol, which should be ready one of these days. Once approved, the attempt is initiated. In the study, the medicine I got tested in a large so-called double-blind test. Then our money to good.

You were even among the first people to try the cancer drug Rituximab against ME. Are you convinced that it was this that made you well?

There is nothing else that has done me well in the past, and I have tried very much. I have struggled with ME since I was 16 and at times I lay in bed 21 of the 24 hours. Now I'm at work and I cross my fingers that it holds. Tests show that B-cell values are low, as they should be. The researchers believe there is something around the b-cells, which are white blood cells that make us sick.

Do you still have contact with the ME Association and other ME sick?

I have daily contact with ME sufferers and has received hundreds of inquiries. It is not necessarily so much I can do, other than to listen and give advice. Sometimes I feel that my physician task in this context to patches wounds that other doctors had made. ME is the most controversial disease we have in Norway.
 

Solstice

Senior Member
Messages
641
Is the ted talk itself relevant, or just that she's still in remission? Would be very good to hear tbh.
 

Gingergrrl

Senior Member
Messages
16,171
Prof Mella said that 11 of 18 of original responders are still in remission at IiME 2017

Do you (or anyone?) know if these are the same study subjects who are in the Fluge & Mella 2016 article (with 12 authors total) from the Journal "Brain, Behavior and Immunity" who were positive for the Cell Trend autoantibodies prior to Ritux?
 

MEMum

Senior Member
Messages
440
Hi guys, sorry I should probably have used the word responding rather than remission.
He said there are gradual recurrences.
I do not know what they do re top ups, I THINK some may get Cyclophosphamide, as he said that out of 40 on Cyclo ME trial, 15 were patients from previous studies and 25 had had no previous TT. He also commented that for people who had responded to Ritux, their response to Cyclo was equivalent.
@Gingergrrl, I'll have to look later today re their 2016 trial, but I'm not sure that I have enough info to answer that question.
They are finding it very hard to "give patients their lives back" and then not be able to give them more rituximab outside the trial setting. I GUESS it is possible that some who have responded well to Ritux MAY get it privately as it is available in Norway. Prof Mella did NOT say this and he has strongly discouraged people from going the private route.
How he feels about this for people who have responded well I do not know
 

Gingergrrl

Senior Member
Messages
16,171
@Gingergrrl, I'll have to look later today re their 2016 trial, but I'm not sure that I have enough info to answer that question.

No worries! My guess is that it is the same people from that study but I do not know for sure.

They are finding it very hard to "give patients their lives back" and then not be able to give them more rituximab outside the trial setting. I GUESS it is possible that some who have responded well to Ritux MAY get it privately as it is available in Norway. Prof Mella did NOT say this and he has strongly discouraged people from going the private route. How he feels about this for people who have responded well I do not know

I had assumed that the responders from the study who were already in Norway would be able to get additional Ritux from Kolibri. Do you know why Professor Mella would strongly discourage people from doing this? I find this surprising and if someone already tolerated Ritux and was a responder, why would they be denied further treatment?!! I believe you- I just don't quite understand the reasons behind it.
 
Last edited: