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Fluge and Mella answers about Retuximab on netmeeting

Can treatment be made at home for patients who are extremely shady?
Hello Birger,

Currently, treatment must take place in hospitals because it is an intravenous infusion and we will have allergy emergency. This may change in the future with new formulations of such drugs may be administered subcutaneously (not preliminary).

V. Olsvik
20.10.2011 At 3:31 p.m.

One of the reason for the mysterious disease is Stomach Virus. Is it true? And what kind, and who can get it from?

It seems that many types of viruses and bacteria may give rise to ME. Probably give the infection a wrong kind of immune system which then leads to ME. We believe that few patients with ME have ongoing infections, but that it is the immune system that is out of sync.

20.10.2011 At 2:52 p.m.

ME-sac is known, unfortunately, a large and complex on the basis of little knowledge and verbose diagnostics for a long time. It is of course crucial to distinguish subgroups.

Understand that this is almost impossible to answer, but. Have you based on what you know
Today, some estimate of how long it will take to find a biomarker (s) that are applicable in clinical practice?
Hello Peter,

To find a biomarker is an important goal our project and the only thing we have so far received financial support. It is very difficult to estimate the time, it can be short or long. To find a biomarker can be like looking for a needle in a haystack.

20.10.2011 Time 1:15

ME sufferers varies as known from the very ill to moderately ill.

Will the average sick (ME diagnosis and reduced, but not bedridden) to take medicine, or the risk of side effects, etc. so large that they initially thought most of the worst ME patients?
Hey Kristofer,

Most patients in our study were moderately ill. We detected little side effects. We know not of ME patients are at greater risk for side effects than the other groups that were previously treated with medication, such as lymphoma patients and patients with rheumatoid arthritis or lupus.

wenche svdsnes
19.10.2011 At 11:32 p.m.

My daughter 14 years, Me with several ailments such as stomach / intestinal problems, dizziness, memory loss and uthalt trtthet.Kan we get this medication with their doctor now? she is struggling with school and is now in 10 klasse.Har lost the entire fjord years, Can this be rescued? Desperate Mother
Hi Wenche,

We have no experience with the drug on children. Therefore, the trial may take place under the auspices of a children's section. From the theoretical viewpoint, it is not unlikely that Rituximab can also be effective in children.

Name (blank if anonymous)
19.10.2011 At 11:30 p.m.

Will you associate other hospitals in the country for the trial of this medication? How should you proceed to take part in such a project? My daughter of 20 years have been ME sick for 4 years and was finally diagnosed at University Hospital in May this year. She lives in Troms, and now we see the final hope .....

It depends on the interest from other hospitals. We hope that our article could lead to trials on a larger scale, both in Norway and abroad.

19.10.2011 At 11:32 p.m.

I had lymfo as a child nine years old in 1976 and as PTSD, I have struggled with ME-like symptoms and are 100% disabled and is of course very interested in treatment that can make me better. What is needed to try the treatment?
Hello! Fatigue after cancer treatment can have other causes, so that we can not say whether rituximab will have the effect of the condition.

Name (blank if anonymous)
19.10.2011 At 10:48 p.m.

Hello! I have fibromyalgia (FM). Can this treatment help with dc as well?

We know we have not studied and therefore can not say anything about this.

Olav and ystein
19.10.2011 At 10:42 p.m.

Hello! Finally a light in the tunnel - maybe we can get back a decent life! :) How can you sign up - be a part of the project forward?
The studies in progress are fully booked. In the wake of our article, there may be new studies, perhaps in several places in the country, where it may be possible to participate. However, this is not clarified yet.

19.10.2011 At 10:36 p.m.

Surely the question of all questions. When is medication available for ME sufferers?
Unfortunately, the medication only in use in clinical trials. Currently, the approved programs fully booked by patients. The faster the program is implemented the sooner it is hoping to take the drug more widely used.

Thank you for the excellent work done in the study. I wonder what plans you have for further testing and deployment in Norway. Hope this is an offer for all health regions, so that the expertise built up outside of Bergen. How do you see for themselves to obtain the resources to treat as many patients as we are in Norway?
Hello, and thank you! Treatment elsewhere than in Bergen is dependent on interest and knowledge in other centers. We hope that it may be possible to get a study going in several places in the country in the future. It will be NOK require special funding from the government. Olav.
20.10.2011 At 8:26 p.m.

It's different degrees of ME - all have been equally hard attacked / knocked out as we have seen in news reports. Or have other hitherto been treated had a milder degree? And there in that case had nothing to say on the success rate? AND last but not least - which takes place the study of ME patients now - is it still the case that the GP should make a diagnosis - and neurologist at HUH? (Live in Bergen) Sets appreciate a response! Thank you for give others hope! Thank you!

Patients were included according to the Fukuda criteria, and all except two met the Canadian criteria, as described in the article. Most had ME in moderate to severe and we have not included patients with very mild disease.

Greeting ystein
Name (blank if anonymous)
20.10.2011 Time 8:05

Can you participate in this project in any way? And Where is Dr Nyland in this? Was with him for 14 days of follow-up of my Me as I was by a mycoplasma infection in 2003. Heard anything about this treatment then. I struggle in addition to Me with other chronic infections such as cystitis interstitciell and also a chronic mycoplasma infection, this will have any impact on such a treatment that you are arrived at?

Professor Harald Nyland is a coauthor of the study and has been in discussions with the recruitment of patients.

Greeting ystein
20.10.2011 Time 8:04

Hello. I am a woman of 52 years and is a nurse. I have had psoriatic arthritis since I was 15 years and is treated with methotrexate in the last 14 years with good effect. This spring I started to get a new type of pain in the joints and body generally, great difficulty sleeping, excessive sweating (with strange odors), concentration problems and a lack of energy and initiative. Note also that the vision has been impaired. Have been sick since the beginning of May. Have the very best when I get to sit still in my chair. A doctor, spec. in rheumatology and spec. in internal medicine think I have chronic utmatelsessyndrom. Can I participate in any new trial and try this medicine that seems so promising. Have you seen a difference between those effects and those who do not have it, the duration of the disease before they got to try medication? I would love to be with, want to get well as quickly as possible. With kind regards, Marit
Hi Marit,

With a small study and only 15 patients in each group is too little data to say anything certain about the duration of the disease in relation to response. We'll look at in the new studies.

Name (blank if anonymous)
20.10.2011 At 6:01 p.m.

It is said that we patients can be divided into two groups. They apparently have very good immune system and "never" get sick from colds and flu and those who have "everything" of the viruses in their vicinity. Did you see any correlation ifht these two groups and who could benefit from treatment in the study?
Hey, we've seen the same in our patients. There is no clear relationship between these groups and whether they get repsons or not. Olav.
20.10.2011 Time 4:49

Hey, do you just Rituximab, or used together with methotrexate?

We are using Rituximab alone in ongoing studies.

20.10.2011 At 5:58 p.m.

Hello, and congratulations on your fantastic resulater!

Is there anything we can do that medicine should be available for all of us as soon as possible? (Collecting money, etc.) Good luck with your further research!

Regards A-M
Hey A-M, and thank you for the nice message!

Currently, it is important that we learn more about the use of Rituximab or other B-cell-depleting drugs in ME. This means that there should be a systematic clinical studies to map the response and any side effects.

As long as the drug is not approved for this indication, we have no occasion to treat outside the approved programs. Collaborate nationally and internationally may be necessary to expedite this process.

20.10.2011 At 3:31 p.m.

I've just gone through chemotherapy and radiation therapy after recidiv of lymphoma. If now, after treatment with Rituximab in two years. After previous cancer period, I was struck by fatigue. Do you think Rituximab therapy can help me so that I will not be affected by fatigue as much this time?

We have not investigated whether Rituximab can be used against fatigue as a side-effect of chemotherapy. There is reason to believe that the mechanism for such fatigue is different from the ME.

Name (blank if anonymous)
20.10.2011 Time 4:01

Hey handsome guys and congratulations :)

1. Is there a correlation, trend, indications pointing in the direction of the deviation in the Ig classes cf effect.

2. Was measured circulating cCD20 in patients. If yes, do you think that this could affect the outcome of the treatment effect, possibly late depletion?

3. The highest ozone titrerverdier of EBV and / or HHV-6 (or the other serologitestene) in some patients, or were these then excluded from the study?

Otherwise - well-worked guys :)

1. We measured immunoglobulins and IgG subclasses in all patients before treatment. No systematic deviations.

2. No, this is not measured.

3. Patients with evidence for active or recent EBV infection was not included.

20.10.2011 At 5:14 p.m.

Can one of the following types of chemotherapy have a positive effect on ME patients? : Doxorubicin
Hey Roger,

We think not. Our first pilot patient received the same drugs for lymrekreft in the first round of treatment with no effect on the ME disease.

Olav and ystein

Congratulations on your discovery. Have you found the cause of ME, or have you found the reason for many of ME symptoms in the body.
Many people diagnosed with ME has been healthy without medication. Is it possible that one track of finding the actual cause of ME, with a symptomatic treatment and medication that can cause serious side effects'. You were on TV2.no cited by the following: Professor Mella and Dr. Fluge think that ME is an autoimmune disease. In other words, they are convinced that ME is a physical disease. Does it mean that you rule out that psychological factors can affect the immune system?
Hey, we can not say that we have found the cause of ME, but we believe that the mechanism may be an autoimmune process. If our hypothesis is right, it opens the possibility to determine the exact cause. We work in laboratory experiments with this and promised forks research support from the Kavli Foundation to it. Most of the disease will always be influenced by the patient's psyche, and we believe that some patients with ME may benefit from cognitive therapy. Do they, however, an ongoing immune disease, we believe that they can not be cured by such treatment. Olav
ME-ill mother of two
20.10.2011 At 8:32 p.m.

There are the various degrees of ME, the "healthy message" happen faster in those with mild degree, than serious?
Hey, we do not know about the degree of symptoms or duration of the disease means anything for the chance to respond to treatment. The very worst patients may have some other mechanisms in the immune system behind the disease and the only study of which can answer about whether these can be improved by Rituximab. Olav.
Anne-Britt Bjrntvedt
20.10.2011 Time 10:39

I have had ME for 7 years. Can anyone get the medicine? And where? This gives hope .... Yours, Anne-Britt
Hello Anne-Britt,

There are many who ask if it is possible to get the medicine now. Although we have answered this above, we repeat again: Currently, Rituximab is not approved indication for the treatment of ME. We understand that the media attention surrounding the results can create great expectations in a very troubled patient group. Currently, however, treatment must take place within the context of approved clinical trials. This is because it is important to learn more about the response pattern and any unexpected side effects.
We hope our results also stimulate other centers nationally and internationally to perform such studies to possibly confirm our findings. If further studies show that treatment is effective and safe, it will in the longer term could be a general offer to patients with ME who have a lot of problems.
There is reason to believe that there will still be some years before this can become a reality. Ultimately, this is also a health policy issue.

Name (blank if anonymous)
20.10.2011 At 8:28 p.m.

The patients who participated in the survey, they had all the ME caused by mononucleosis? How long had they been sick?
Hi, this is not true that all had had mononucleosis (in terms of the three patients in the pilot study). They had been sick from 0.7 years to 18 years. Olav.
Kre Breivik
20.10.2011 Time 11:06

WILL people who are not so badly affected by the disease, yet have distinct symptoms and have been unable to work could also be treated with this method?
Hey, it's clear that even patients who are bedridden and the poorest can benefit from such treatment. If treatment is given is a trade-off between possible benefits and possible side effects. Olav.
20.10.2011 Time 8:22

ME is the often regarded as a somewhat diffuse disease, like a sack of mail for a more even psychiatric conditions. Can this study help to sort the "real" ME patients from the "illegitimate"? And in that regard, those who have not responded positively to study medicine, this may be "illegitimate" ME patients?
Hello, we find remarkably little psychiatric symptoms in the ME patients we have studied. We see no correlation between response and any mental health problems in our patients. We believe either explanation for the difference in response is related to the B-lymphocytes that produce autoantibodies in the individual patient, there are mature plasma cells or more immature B-lymphocytes. Olav.
Jorunn Martinsen
20.10.2011 Time 10:06

I would first like to congratulate you with a fantastic achievement! This gives great hope to many sufferers. My question is whether this medication can help with other autoimune diseases such as the one I have, MB Bechrtew? It would be incredibly amazing with a little bit of hope?
Hey Joel,

We know that Rituximab may help with other autoimmune diseases, with the effect of varying degrees.

Name (blank if anonymous)
20.10.2011 Time 8:24

Excerpts from the common directory: "Very rare cases of fatal progressive multifocal leukoencephalopathy (PML) have been reported after use of rituximab for the treatment of rheumatoid arthritis and autoimmune diseases, including systemic lupus erythematosus (SLE) and vasculitis." Is this something you have taken into account in studies? How much chance is there that this can happen since you then consider this as an autoimmune disease?

We have in the article described serious side effects such as PML. This has been reported after use of Rituximab with either chemotherapy or concomitant immunomodulatory treatment, very rare - less than 1 in 50,000. It has not been proven by Rituximab alone.

Rituximab is generally a safe treatment, but if a large number of patients treated over a long time, we see side effects such as reactivation of viral infections such as hepatitis B. These risk factors will be examined before applicable, inclusion.

Name (blank if anonymous)
20.10.2011 Time 8:05

Hi, congratulations on important research ang ME, you are doing a fantastic job for sick people .. I wonder if low thyroid, which is also a autoimunnsykdom? can people who have to go on levaxin rest of their lives also benefit from this research? Regards, Bente

Low thyroid and levaxinbehandling is no obstacle to participating in such a study.

Name (blank if anonymous)
20.10.2011 Time 10:23

My husband has had ME for many years, I have RA. I have seen many similarities between the two diseases, and wondered. Now I have just started with the biologic drug Enbrel and is experiencing a miracle. Can it be that their discovery can now lead to the ME patients can try out biological medicines that are used within revma? I know that Retuximab that you now have researched a revmamedisin. And last but not least, when these drugs become available for ME patients?

Regards Lisbeth
Hey, it's not unlikely that other medications used in autoimmune diseases also can have an effect on ME. They work differently and can provide more rapid response, but we are uncertain whether they will provide a long-term effect of Rituximab can. Olav.

one of you said that there are many people who have ME, and some that do not have that diagnosis. and that you must find out who has it they and who do not. what I wonder is what do you think they have then when they do not have ME?
Hello Josephine,

As long as we do not have a blood test that can be used in the diagnosis, we depend on clinical criteria, and rule out other diseases that can cause a similar picture. The Canadian criteria and the recent proposal for the adjustment of these is a starting point for the description of the ME. It is important to differentiate ME from more general fatigue states. While ME may affect 0.2 percent of the population will more general tiredness and fatigue without other leading saws symptoms may be more prevalent among perhaps several percent. We believe it is important that patients included in clinical trials are the most homogeneous and satisfies the diagnostic criteria. We hope a biomarker / blood test that is specific for the condition will be available in the future.

Name (blank if anonymous)
20.10.2011 At 6:52 p.m.


Congratulations on your amazing breakthrough!
My ppm is on the side of the ME case, but hope for an answer anyway. If you think that cytostatikaen helps because ME can now be considered an immune disease, it can then also help with MS?
Hello, MS can also be affected by Rituximab and it is shown that new outbreaks of MS is less when using drugs. Olav
Espen Lyngra
20.10.2011 At 1:57 p.m.

Many people with ME are so bad that they have little to lose by trying new treatments. Is this an argument to speed the process up to an approved treatment? Where to register their interest to participate in the next phase of a wider effort? Will the ME as "just" is half bad to be excluded because in some ways can ail through life on their own, or will these be included in the "scope" for research and treatment in the future?
Hello, approval of new methods in medicine follow certain guidelines and must do so if the different patient groups should be provided justice. The rest of the question, I replied to another question. Olav.
Jeanette Hanke
20.10.2011 Time 12:17

Want to thank you with all my heart for what you have done, I'm 26, have had ME for 11 years and I sat and cried through the whole of yesterday reportasje.Av joy. I have 2 questions:
1) The body feels real as the attack itself. But anyone who has been diagnosed with ME after myyye rest improved or completely. How can this be explained in light of the ME seems to be an autoimmune disease?
2) What are your specific plans regarding the future. research and treatment, and how will this affect us who have ME, but that does not have the opportunity to be part of the study?
Hi Jeanette,

We know that the course of ME can vary. While some patients appear to have spontaneous improvement, while others are persistently ill for many years. It is interesting that many patients describe them at rest and shielding from the sensory input may experience some improvement. The very sickest're often completely isolated in sound and light-proof room. Maybe it says something about how a possible autoimmune process works in the body. We wonder therefore whether the "target" for a possible autoimmune process is localized in the part of the nervous system that receive such information.

20.10.2011 At 8:04 p.m.

How expensive is this medicine with the treatment that is used? Can the price of the drug cause the government will not give it to anyone who may have an effect (if it proves to be effective also in later studies)?

I remember hearing about a drug that was found out that was very effective against MS (think there was a cure for cancer, maybe it was this?), But that was the second most expensive medicine, and the manufacturer would not fund further studies because they would lose the patent before or just after the study was completed ...

PS: You are of course aware that ME has a sack diagnosis, where (much because of the name "chronic fatigue syndrome") far too many people diagnosed with, or say that they have ME though they have not diagnosed because they are struggling with a bit of fatigue and second diffuse symptoms and have read about ME in the media. Too many treatments fail because they take themselves _alle_ with the diagnosis. I hope you have a goal to find a cure for a subset of ME patients, and not all, for it will not find. Too many have gone into the trap, and then you get is often not the major results vs. placebo.
Hi, this is unfortunately an expensive medicine. It may limit its use, but if our results are confirmed by others, I am fairly sure that the Norwegian authorities will approve the treatment. When we see that patients can return to work after treatment will also be "profitable" to provide treatment for the community. Olav.
January Ronald Larsen
20.10.2011 At 6:51 p.m.

I have Non hodgins syndrome and has taken chemotherapy and is fine again, but perhaps it can come back? Is so uncertain in hverdagen.Lykke with further studies in Me, very nice done, the dolls are hollow duck good!
Hi, this you must take up with your doctor, we assume that an oncologist has been involved in the treatment and the right to ask about your future prospects. Thank you for your congratulations! Olav
20.10.2011 At 7:58 p.m.

Are there tests you can take either regular doctor or hospital that detects CFS / ME? And what treatments are recommended for both medical and otherwise?
Hello, unfortunately there are no blood tests one can diagnose with. Diagnosis is based on the patient's symptoms following international current criteria. There is no universally accepted treatment for ME today. Olav.
20.10.2011 Time 12:02

Hello. I have ME and have for years been a lot worse in the winter and slightly better in the summer. Have you seen this in several patients and have you any idea evnt reason for this? If you have more studies with other patients and we have to wait long before "everyone" can get it?
Hello Cecilia,

We have some limited experience with ME patients, but have the impression that some think they have a little better in hot weather. Some other diseases like Rheumatism can describe similar effect of temperature. We have no certain explanation for the mechanism.

Name (blank if anonymous)
20.10.2011 Time 11:47


ME is the smangt, who has ME of Borrelia, they will benefit from this treatment method? Will it be researched more to ME that Fit Your of Borrelia? It has long been known that Norway lags behind in Lyme research and reports, as you do not even have a single qualified public treatment center for this ... : (

vrssnill and warn the public against these lightning courses, there is only deception !!!!!!!!!

One who hopes it will be easier to get help in public! We live faith-salt in Norway, and we have money and ressuser to improve! We are a omtenktsomt peoples!
Hey, we consider it likely that the pathogenesis in borelia that prolonged antibiotic treatment has strong similarities with ME. It is possible that Rituximab here can have an effect, but it is not yet proven. Olav.
20.10.2011 Time 12:00

I note Hallelujah-mood at Haukeland, TV2 and the ME Association. It provides a basis for skepticism. Is this a double blind study? How many participants were in the experimental / control group? How are you with the inner valididiteten (excludes you that the effects may be due to something other than treatment?)? What could be causing the effect failed to appear at 1 / 3 of the participants? Where to find criticism of their study?
Hello, Our study is small, but it is the first report in the world of B-cell suppression by ME. The study was double blinded (neither we nor pais seats did what they could of Medicine) and half received an inactive then to see if it was a placebo effect. Response in two thirds of the patients is common with Rituximab treatment of known autoimmune diseases. If you are interested in more detailed answer, you should read the discussion in the article in PLoS One. Olav.

can be viruses, bacteria or parasites be triggered.
Hey, 70 to 80 percent of patients with ME have an infectious disease shortly before the outbreak of ME. We believe that ME may be due to an error response in the immune system, often triggered by infections. It is NOK many different viruses and bacteria that can trigger the disease. Olav
Name (blank if anonymous)
20.10.2011 At 9:00 p.m.

there are side effects with the new medesinen. how long it must be used. I have fibromyalgia, can it help me?
Hey, in the study, we noted little side effects. We know not of ME patients will tolerate the medication as well as other patient groups, since so few ME patients are treated. We believe that most patients need repeated infusions for a prolonged effect. We do not know if fibromyalgia can be affected in the same way as ME. Olav
20.10.2011 At 8:59 p.m.

First and foremost, Congratulations! Can you say something about the age range of those who participated in the study, and whether it is the youngest who has had the best recovery?
Hi age range was from 18 to 57 The material is too small to say whether it was more likely repsons in a specific age group. Olav.
Name (blank if anonymous)
20.10.2011 At 9:37 p.m.

My wife was diagnosed with ME for 6 years. It seemed that way when all clinical samples are taken and everything is negative (nothing failed), but the patient is still sick, so get the ME diagnosis. How and what coping have you as a criteria for who can be treated with chemotherapy rituximab? Is it simply just assumptions. But as sick as she is, it is worth trying at all. When you think that everybody is treated with chemotherapy rituximab?
Hey, ME diagnosis is now purely clinically because there is no blood test (biomarker) that can provide the diagnosis. It is true that ME is an exclusion diagnosis, but the criteria are well defined. It has struck us that our patients are surprisingly similar in symptom his picture. Despite a lack of biomarker had two-thirds of the patients in our study the effect of a drug that only has a known effect, namely, in a special cell in the immune system (B lymphocytes). It will be NOK still some years before any Rituximab (and other drugs that work in a similar manner) may be approved for use in the mainstream health care. Olav
Name (blank if anonymous)
20.10.2011 At 9:34 p.m.

If patients in the study suffered much infection since the immune defended the oppressed?

In the published study, there were no serious infections. Other respiratory infections were fairly evenly distributed in the Rituximab and the placebo group. We have much experience in the maintenance treatment over a long period of Rituximab in lymphoma treatment and there is little risk of serious infections. Nevertheless, we affect the immune system. The reason that we treat seriously ill ME patients with Rituximab is that we believe there is a severe disease with significantly reduced quality of life for the patient (and relatives). In general, we believe the treatment is safe, but if a large number of patients treated NOK long NOK time, we will necessarily see any side effects such as the infections.

Name (blank if anonymous)
20.10.2011 At 7:13 p.m.

What does this cell poison, and how many doses have "experimental patients" received?

We have used Rituximab is not a chemo, but a more targeted drug that specifically attacks the B-cells by the drug binds to a molecule on the surface (CD-20). Patients in the study received two doses two weeks apart. In the current study now given the additional maintenance therapy with new infusions after 3, 6, 10 and 15 months. The treatment is relatively expensive so far (20 to 25,000 per infusion), but the price is expected to fall because the patent to the pharmaceutical company goes out within a couple of years. Moreover, a number of pharmaceutical companies that have new drugs with similar mechanism of action during open sailing.

Greeting ystein
20.10.2011 At 9:32 p.m.

I am a woman of 34 years in the last 7 years has struggled with large muscle / joint pain, fatigue, headaches and general illness emotional. I have been examined for arthritis but no inflammation in the joints, have instead been diagnosed with fibromyalgia.
I also have psoriasis and was in a period Metotrexatebehandling for this! I was in this period in very good shape, lots of energy and felt great! I had to quit because of new pregnancy and after that felt worse than ever! Could it be that I am feildoiagnostisert and that I should start with methotrexate again?
Thankful for answers!
Hey, our first pilot patient was originally effects during chemotherapy for lymphoma. The active ingredient in combination chemotherapy thought we were just methotrexate. The drug may work in a similar manner as Rituximab, but less strongly on B-cells. It is quite possible that the effect you noticed was the influence of an autoimmune process. Olav.
Male 34
20.10.2011 At 7:01 p.m.

Got mononucleosis for over a year ago after mononucleosis were found deficient in iron and vitamin D. After I recovered, I have been less obvious and less energetic than I had before I got the disease. Have you seen any connection between the Epstein Barr virus and ME?

We know that ME can be triggered by various infections. Among the most common is mononucleosis caused by Epstein Barr virus. We believe there is an abnormal immune response to infection that gives ME the disease.

Stig Pedersen
20.10.2011 At 6:59 p.m.

Hello, congratulations with the compelling breakthrough. I wonder whether those who have been fresh / experienced improvement has had a relapse? Is this a treatment that must be repeated to keep the patient healthy life?

Stig Pedersen
Hey, eight of the ten who had response relapsed after the two infusions were given in the study. Currently, we provide maintenance treatment (refill) with rituximab to see if the effect can be prolonged. It looks promising. Olav and ystein.
20.10.2011 At 9:01 p.m.

Do you see any sign gamma retrovirus hiding in b-cells and this treatment? Congratulations and thx for your work.
Hey, we have not found any signs that the virus is in the blood of ME patients despite significant exploration. Other groups have gradually reached the same conclusion. Olav.

How can we put ourselves on the list of studies on the treatment of children with ME?

Unfortunately there are no planned studies of children. Academic environment on children's departments need to consider if you want to start trials with Rituximab or similar drugs to children.

Many of you who write want medicine or participation in the study. Unfortunately, most wait until treatment is established in the regular health care. Patient stories we hear make an impact and we have full understanding for the suffering and humiliation many patients have experienced. The best we can do for ME patients is to conduct thorough and well-designed studies to learn as much as possible about the disease, its causes and how we can use Rituximab best.

We need to end your meeting here. Support for the meeting has been overwhelming. If you have not received an answer to your question, we have tried to answer the question with a similar problem and we hope you can find answers in other questions. Thank you for your dedication and all the questions we have received!

ystein and Olav
20.10.2011 At 10:18 p.m.

So good you are, lots of luck in further research! I hope this time will cure my fatigue, too! Is this tested on lymphoma patients??
Hello Laila

Rituximab is used very much in lymphoma that originates in B cells but not in Hodgkin's lymphoma! We know that some Hodgdin patients may struggle with fatigue and fatigue after lymphoma treatment. We believe the mechanism for this is different than the ME disease making it less likely that Rituximab will work directly on this.

20.10.2011 At 9:43 p.m.

Hello, I am 34 years and have had ME for almost 2 years. I got ME as a result of swine flu vaccine and I was wondering is whether this treatment can help no matter how you've got ME and no matter what age you were when you were diagnosed?
Regards Ingbjrg
Hi Ingeborg,

Me, the experience we have so far seems to be no clear pattern of who gets the response in relation to the triggering factor. This means that both patients with infection before the ME image and patients without such a clear causative factor has been clear response.

20.10.2011 At 9:39 p.m.

Does it matter for the result how long you've been sick?
Hi Jane,

In the study we included patients with disease duration up to 18 years. We know that patients with a long history may be in response to Rituximab. If there is a level of physical exertion trend toward better response with shorter disease duration we do not know yet because the number of patients treated so far are too low to be certain of this.



Fine, thank you
Great find, kheopz - kind of surreal reading in places because of the translation! I didn't get that thing about the duck.

This is interesting (I wonder what the "open sailing" thing really means in English):

"The treatment is relatively expensive so far (20 to 25,000 per infusion), but the price is expected to fall because the patent to the pharmaceutical company goes out within a couple of years. Moreover, a number of pharmaceutical companies that have new drugs with similar mechanism of action during open sailing."

And so is this:

"Hey, eight of the ten who had response relapsed after the two infusions were given in the study. Currently, we provide maintenance treatment (refill) with rituximab to see if the effect can be prolonged. It looks promising."

And it's nice to hear this:

"Patient stories we hear make an impact and we have full understanding for the suffering and humiliation many patients have experienced. The best we can do for ME patients is to conduct thorough and well-designed studies to learn as much as possible about the disease, its causes and how we can use Rituximab best."

I wish someone had asked them about the likely chances of compassionate off-label use for the sickest of the sick but this is all good stuff.
Hi, yea google translate I was abit quick to share it... :)

About that paragraph, It means alot of other pharma companies have drugs with similar mechanism of action in the pipeline
The time I saved by just putting it in google translate I now have to spend explaining people hollow duck and open sailing .. :D


Senior Member
Thanks for posting kheopz - where they have got so far is stunning and hope all their research will continue - thank heavens out of the UK for serious biomedical research not allowed and ignored here.


Senior Member
Kheopz. Many many thanks for this. Is there a Norwegian link please. Some folks here read and understand other languages. Thank you so much. Thank you for taking the time and trouble to translate. We are all sitting on the edge of our seats here. Best wishes, Helene


Senior Member
Re: Google Translate
I enjoyed this patient question:
Can treatment be made at home for patients who are extremely shady?

I guess some of us shady characters need to hide out at home and would like to get treatment without having to go out in public? Especially the extremely shady ones. ;)


Bundle of purpliness
Thank you for posting this - very much appreciated. Does anyone know what NOK refers to? I assume it refers to the Norwegian Krona (the currency, abbreviated to NOK) but is it an abbreviation for something else too?

Yes, this made me smile too, SOC - but on the other hand, it's great to have Google Translate for almost immediate access to information in different languages.

Re: Google Translate
I enjoyed this patient question:
Can treatment be made at home for patients who are extremely shady?

I guess some of us shady characters need to hide out at home and would like to get treatment without having to go out in public? Especially the extremely shady ones. ;)


Senior Member
New England
kheopz, I feel closer to the reality of what these research doctors have been learning about ME. The intimacy of those questions and answers provides a lot of energy and hope. Thank you for bringing this to the forum. It is like a wonderful fish you caught and brought back to the people here to share.