ME/CFS South Australia Inc supports the needs of sufferers of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and related illnesses. We do this by providing services and information to members.
ME/CFS South Australia Inc aims to keep members informed of various research projects, diets, medications, therapies, news items, etc. All communication, both verbal and written, is merely to disseminate information and not to make recommendations or directives.
Unless otherwise stated, the views expressed on this Web site are not necessarily the official views of the Society or its Committee and are not simply an endorsement of products or services.
Rituximab for ME: I am patient pilot
Friday 7 December 2012
From Norwegian ME/CFS sufferer Maria Gjerpe on her blog Marias Metode (translated from Norwegian via Google Translate):
English version at the bottom!
I've waited a long time to say this:
I am so lucky that I am one of the first ME patients in the world who have received infusions of Rituximab at Haukeland Hospital, where I have been patient for pilot testing of Rituximab for ME patients. I've had great positive effect of the treatment. On the one hand I pinch my arm and almost do not believe it's true. On the other hand, it is as if I have never been sick. We humans are fortunately so made that we quickly forget what was and quickly adapt to a new situation. Thus in any case I made.
So far, I had so much I
Could I then imagine that today I would drive through the city streets, Gaul with radio on full blast? Hardly. Or: It was not that I thought about it and found out that it would never work. It just was not something that was in my vocabulary. Just like collecting stamps is not my style. If you understand? I have not yet started the process of vigorous exercise, but it will be the next phase for me. Guess if I wait? Yay! I'll write more later about how my world has changed in the last six months in a later post, and how I am now approaching a healthy, normal life.
Fresh with disease?
What it means to me to have been treated, I will write more about in future posts.
Funding for further research sought
I've written about the ongoing research in the post "Sensational Breakthrough shows the way in ME research." and TV2 have made collect pages with lots of information.
April fool without
During monitoring of Dr.Fluge, Dr.Mella and nurse Helle I've got my regular doses of Rituximab. When I came into the department, I had to be helped from wheelchair to bed, I could not answer in complete sentences, I was lying with sunglasses or a blindfold and earplugs, curtains drawn over, got physical pain if someone was unfortunate enough to be caught in my bed - and to get me to the department I was running in the tunnels under the hospital orderly. Insult to capitulate and be transported along with the 94 year old men going the same way, but, slop. That was it. I had taken a bike test that produced all my CFS symptoms half an hour earlier. Not least, I had to have me follow 24 hours / day to manage the trip and everything belonged. It's a world I possibly not recognize me in today and almost have reminded existed for only a few months ago.
After the study was published, I had participated in a panel discussion and a radio debate with, among other things Fluge, we discussed CFS symptoms, their possible mechanisms, what I thought, as a physician with knowledge of pathology (pathology), nervous system (neurology) and the immune system (immunology) and, not least, as a patient who knows the symptoms of the body and thus has both knowledge and experiential knowledge. It became clear that they needed a pilot patient to study and I was, as you understand, that asked if I would like to be guinea pig. There was no easy answer for me on that question.
Anguish and many thoughts
There were three main reasons:
1. It's usually pretty random who will pilot the patient, as long as they otherwise meet the inclusion criteria. I was there right when they decided that they needed one. It could be just coincidence another patient, as has been the 6 other times they penetrated pilot patients.
2. I am able to make suggestions that may benefit other patients and researchers for good, just because I have my medical expertise and understand (as far as wecan understand it) how a body hanging together.
3. I have ability, are willing and have the opportunity to share what's happening, even to the outside world. There are also other patients benefit when I relatively good dispersion can relate what my experience is. Perhaps it helps to change what other people think about this disease? Although I do not want my experience to be a campaign in itself, I think it's important to share them. Perhaps others see that it is wise to research, apply knowledge, know who we are working on, so we can get the right treatment for the right patient, when they see that I, and others, have been as good as we are? We get the people our lives back.
This is my story. One anecdote. I tell it this time as a patient who has experienced great improvement in a type of treatment we do not know anything about yet, for a disease we do not know anything about yet. I also want to emphasize that we do not yet know much about how this medication works in the long run for ME patients, even though many other patient groups, such as arthritis patients and Lupus Patients receive medication regularly.
I trust the scientists, who have a lifetime of clinical research experience in the bag, when they state that I have a great and safe response. The scientists told me after having observed over time and they were confident response, I have the exact same response manner, same response, same symptoms, as several of those who have participated in previous studies and has been effective.
Earlier I said yes to answer journalists' questions, and thus not as' pusher 'or acts as my "health activist" and seeking decision makers. The same applies when I have been asked to speak to medical associations, politicians and others. I have been most keen to talk about the long term and how many experience encounters with the health care system and NAV. Because I am concerned with communication, I have talked about health care use of social media. I did not mention ME and health policy, with the exception of the time I communicated my concern for the blood bank for a couple of years ago.
My main message
In addition, I have been concerned that the Lightning Process in a period seemed to be uncritically embraced by health professionals and health arenas, where the government is responsible for the content. This I have criticized, as for me, again as a doctor's strange that we are not critical to a treatment that is not performed by medical staff, who are undocumented, private, and where patients need to spend large sums of their personal finances. When the addition is promoted in a way I think is unethical, I find it my duty to point out this.
What I wish could have been done differently
In 2 of the 35 items I mentioned Rituximabstudien in relation to Lynprosessen / Lightning Process (LP) in conjunction with the Public Health applied for funding to conduct research on LP. In the records I've done my best to address the issues with a medical professional attitude and assessed the applications and different trials against each other purely descriptive. My dual role as ME patient and physician is familiar and something I've focused on being open at all times, so that all may know my background.
These are the records I wish I had had the opportunity to say that I even received Rituximab treatment. That said - I have even no benefits, as far as I can see - to get this trial through, other than that I obviously want as much knowledge about the disease and its mechanisms for this patient group and that I've always talked about the need for more biomedical research. Also long before this study from Haukeland Hospital came. I am also far from being in a position where I have the power to grant or directly affect a grant of a penny.
Perspectives: first, first
I hope also that we will soon have a place where all who are sick get the right treatment for the right to their disease. Meanwhile crosses I still all I have means for the third phase of Rituximabstudien, so that it is complete. If funding does not come from the public, I promise here and now that I will do all I can, with the energy and the commitment I have to make sure that the money is still the way to Haukeland Hospital. I can not possibly "go ahead" and turn back to my ME sufferers colleagues, when I have tasted what this medication can do with a sick body. It's just that I have to do something about the situation, so that it will be better for as many people as possible.
Together we will go in this country!
English version / information: I know that English Speaking Patients are interested: I am a Norwegian ME (CFS)-ill patient and a medical doctor, had 5 Rituxan injection with very good effect, as an pilot patient for Rituxan-study at Haukeland Hospital, Norway. My first injetion was in April, 2012. I am now at 80% of my capacity, from being horizontal positoned for 21 hours a day. I will write more about the effect on my body and a little about the treatment later.
The scientists working on this study are respected cancer scientists and clinician in Norway at the second biggest research hospital in the country - Haukeland University Hospital. Professor Olav Mella is head of the Cancer department at the hospital and has published Several studies in good scientific journals Wed cancer.Publications from Dr. Oystein Fluge is the head scientist on the study.
The scientists behind the original Rituxan Findings that was published in PLoSONE in October 2011 have been working extensively Wed putting up a bigger randomized clinical trial, a third phase. They have now Applied for funds from the Norwegian funding agency for medical research for a trial with more than a 100 Patient (involving at least two hospitals - a multi-center trial). The total cost will be around 2 million USD (a bit less) You may read about the paper in PLoSOne: Benefit from B-lymphocyte Depletion Using the Anti-CD20 Antibody Rituximab in Chronic Fatigue Syndrome. A Double-Blind and Placebo-Controlled Study and that the hompage for the national channel TV2 in Norway: Everything about the Rituxan-study .
There are a very small minority of applications that actually get funded through the Medical Research Council in Norway. If this study is not funded, I will do my very best two fund it through a private initiative. I find this study very interesting, not only for ME (CFS) patient, but also for other illness that seem to be blurred and unsolved at the time being. Even if Rituxan is not the whole and only answer for everybody, a third phase study showing good results, will show wooden direction to go in futher studies Regarding these diseases.
Thank you for sharing and caring - togheter we can make a difference. I'll keep you posted about the results and funding of the study.
Read more about my experiences in the next post / Read more about my experience in next post:
The above originally appeared here.
Maria's original post in Norwegian is here.
blog comments powered by Disqus