Is there any way I can be treated with rituximab privately?

[Sasha]

It may not have occurred to anyone to analyse. We had evidence from the outset that response rates in young and old were substantial so there would seem little to learn from the precise figure. It might possibly tell us something about the immunology but I would expect that to be more to do with length of disease. The first patient was around 70 and had had disease for about 20 years and did very well.

Good to know - speaking as someone who is starting to knock on a bit now.

Thank you!

@Simon, we were talking about this.

 

[bthompsonjr1993]

I recently realized that of all of the people I know of/have heard of who have responded to Rituximab, none of them have been male. Does anyone know of any males who have responded to rituximab? Or does anoyone know how the percentage of male responders from the norwegian trials compares to the percentage of female responders from those trials?

 

[bthompsonjr1993]

Also, after reading over the canadian criteria (which patients must fit to be a part of the norwegian trials), my understanding is that if somebody does not experience pain they do not fit that criteria, can anyone tell me if my interpretation is correct? Because when I am constantly resting I do not feel pain. When I use my muscles though they do get sore very easily and it takes a long time for that soreness to go away. And when I am doing somehting as simple as combing my hair I can feel the painful burning of lactic acid building up in my shoulders, and I have to take frequent breaks. Sorry for the long post, I am just trying to figure out if I would qualify for the canadian criteria of cfs.

 

[deleder2k]

I recently realized that of all of the people I know of/have heard of who have responded to Rituximab, none of them have been male. Does anyone know of any males who have responded to rituximab? Or does anoyone know how the percentage of male responders from the norwegian trials compares to the percentage of female responders from those trials?

If you read the previous slide you have all the details. I count 4 males with a major response and 2 with a moderate response.

 

[bthompsonjr1993]

If you read the previous slide you have all the details. I count 4 males with a major response and 2 with a moderate response.

Okay, thanks for that info. And if you are talking about the post you made where you provided a link and then listed the non responders and their ages, for some reason my computer won't let me open the link you provided, so that is why I didn't simply read that to get my answer.

 

[deleder2k]

Okay, thanks for that info. And if you are talking about the post you made where you provided a link and then listed the non responders and their ages, for some reason my computer won't let me open the link you provided, so that is why I didn't simply read that to get my answer.

Strange. What if you click on this: http://bildr.no/image/eW13QU10.jpeg ?

 

[bthompsonjr1993]

Strange. What if you click on this: http://bildr.no/image/eW13QU10.jpeg ?

Yep, that one works, thanks!

 

[Anne]

We know CDC and NHS are not going to promote new ideas and treatments, and neither are the drug or insurance companies, so that only leaves patients and doctors. I'd like to see an effort to send knowledgeable folks to a rheumatologist conference or two. Doctor-to-doctor education in informal settings could spread the word without upsetting the bureaucrats.

I know we are told everyday, over and over that Twitter and Facebook and Google and Skype are going to save the world, but they can't beat in-person discussions, so personally I am not interested in Twitter campaigns and signing computer petitions.

It seems to me that we should be able to raise enough money right here on our forum to send someone to a conference. Please forgive my presumptuousness @@Jonathan Edwards but I can't help thinking you would be a fine spokesman for us and probably a very entertaining speaker to boot! I'm sure there are other folks who would be equally effective - anybody who is willing, we should try to fund them.

What I think are needed are small conferences that draw in people who are interested in ME or might be persuaded to be interested. The IiME conferences and workshops are the ideal model and they are doing just this. Other organisations are doing similar things. In the UK MEA is very proactive about meetings too. One to one or three to three talking is going on and very effectively. I am quite optimistic about that side of things.

I think this is an excellent idea:
"I'd like to see an effort to send knowledgeable folks to a rheumatologist conference or two. Doctor-to-doctor education in informal settings could spread the word without upsetting the bureaucrats."

My experience is that some rheumatologists and immunologists are curious about ME and could get interested/involved, but at this stage they wouldn't go to an ME/CFS conference. However, if a presentation on ME/CFS was made at a rheumatology/immunology conference, that could possibly spark their interest enough to start a dialogue with the presenting doctor and perhaps get involved.

What do you think, @Jonathan Edwards ?

@jimells

 

[TeresaBCN]

Does anybody know of any private clinics in the UK offering rituximab? I've tried google but no luck!
Thanks

 

[Marky90]

Does anybody know of any private clinics in the UK offering rituximab? I've tried google but no luck!
Thanks

No one at the moment, unfortunately.

 

[mango]

two more news articles, in norwegian, about the private clinic in norway:

http://www.nrk.no/rogaland/betalte-200.000-for-eksperimentell-me-medisin-1.12676279

http://www.e-pages.dk/aftenbladet/3...ender/?token=66a5ec4d2bfdf6e20d97aef71216757e

 

[digital dog]

Anyone translate these?

 

[Jonathan Edwards]

Anyone translate these?

Former ME sufferers Lynne Gilje (31) had the following choice of their doctor, whether you are sick for three to five years, then you will be healthy, or you are sick for five years, but are never fresh.

A third possibility was to try an experimental drug, Rituximab, to 200,000 kroner. Gilje therefore sold their apartment and moved in with her parents.

- When the option is to lie in bed for 12-16 hours a day and do not bear a few things - not going to work, not being with friends - when I feel it's worth every penny, says Gilje.

From being seriously ill from chronic fatigue syndrome ME he has now been healthy for three months.

- Most people take the risk
Private The hospital Kolibri in Sandnes Rituximab to ME patients. But it costs nearly 200,000 kroner, and there remains much research before the medicine is approved for ME sufferers. Nevertheless, around 25 ME patients accepted the medicine.

- We see that the vast majority chooses the risk, says Dr Dagfinn Øgreid.


Olav Mella, ME researcher and head of the cancer department at Haukeland Hospital.
PHOTO: MARTHE Njåstad / NRK
Investigation of efficacy and possible side effects of Rituximab is first ready in 2018. Olav Mella researching medicine effect on ME patients. He warns against using Rituximab in this patient group.

- We have in the publication context said that one should not treat patients without clinical trials, for we know too little about the effects and side effects, says Mella, who is director of the cancer ward at Haukeland Hospital.

As daily marathon
Doctor Øgreid at Kolibri emphasizes that the use of the medicine on ME patients have occurred after a careful consideration:

- There is a chance to take, and we are very clear to those who accept the offer that research has shown that one third seems nothing on, a third seems to be healthy, and a third appears to be better , he says.

ALSO READ: ME sufferers Eiriks (28) desperate plea for help
Former ME patient Lynne Gilje has been healthy for three months, but in one year he felt ME on the body:

- It feels like you springing a marathon every day. How tired are you after one hundred days and a hundred marathon? from shore.

Opens supervision

Paul Iden, county medical officer in Rogaland
PHOTO: ROLV CHRISTIAN TOPDAHL / NRK
10-20000 people diagnosed with ME in Norway. Many of them are desperate to find a way to stay healthy on. Nevertheless, county medical Pål back in Rogaland super- vision towards Kolibri.

- We have a concern related to this treatment, says county doctor.

- This is processing that currently must be viewed as experimental treatment, and it is quite strict about what is foreseen by both the information to patients and frames around the treatment itself, says Iden.

ALSO READ: Ber Health Directorate remove disputed ME-advice
Published 11.27.2015,

 

[Jonathan Edwards]

Kolibri gives ME sufferers very expensive medicine that may not work
Sandnes

ME sufferers offered treatment costing up to 200,000 kroner, has not documented effect and which can give very serious side effects. Fylkeslegen created supervision.

Ina Gundersen, ina.gundersen@aftenbladet.no
SANDNES
Patients with chronic fatigue syndrome (CFS) offered treatment with the cancer drug rituximab by private Kolibri Medical in Sandnes. The treatment has a price tag of up to 200,000 crowns.
This has led more people to react, partly because this treatment is currently in the research stage.
There is an ongoing larger study by several Norwegian hospitals, but the results here are not expected until 2018. The county medical officer Paul Iden now establishes supervision.
There is a doctor Preben Aavitsland who sent concern to county doctor practice at Kolibri.
- The drug used is a very strong medicine to knock out parts of the immune system. That means there are potentially very serious side effects, at worst deadly. When initiating such treatment, one must be absolutely sure that it has something for themselves. In my view, there is currently no scientific basis for that treatment has any effect on the disease, says Aavitsland.
He was previously director of the Institute of Public Health and now runs his own firm engaged in consulting and research in infection control.
- Payment illegal
- In addition, the treatment is outrageously expensive. If future research should show that this works, it is natural that it offered and paid by hospitals. But to run a business on this today is special. The core is that it is experimental treatment. Then there are certain rules that apply, he says and points out that in health research is not allowed to charge for the patients.
Although experimental treatment is indefensible, required additional information to the patients so that they understand that the treatment is experimental and that it is not known whether it works. It also requires good documentation and monitoring of the patient, he writes to the county medical officer Paul Iden.
- The reason why we are creating a supervision is that form of treatment has not documented effect from the research that exists. It will thus be strict framework for conducting such experimental treatment, including the information to patients. The treatment is not risk-free, and the patient should be closely monitored. We will look more closely at whether this is done in a satisfactory manner, says Iden.
About a price tag up to 200,000 kroner is acceptable is not within the county governor's framework to assess.
- But I think it is worrying that one has initiated treatment that considerable cost to the patient before we know whether there is effective treatment, says Iden.
- More is better
Kolibri would not answer questions about the case, but in an e-mail claiming Medical Director Dagfinn Øgreid that research at Haukeland University Hospital have shown that up to 70 percent are cured or get good improvement when treated with rituximab.
Side effects are generally mild and harmless, but he admits that they occasionally are severe. Furthermore, he writes:
"Based on the good results from Haukeland with good effect and little side effects decided Kolibri to offer these patients experimental treatments in May 2015. The criteria for participation is that the diagnosis is from an external institution, patients undergo a thorough evaluation prior to treatment to ensure the quality diagnosis, patients are informed about the expected results and any known risk factors and possible side effects and the signing informed consent forms. The declaration also confirms that it is an experimental treatment. "
"Several of the patients who have received treatment with us has been healthy and has improved substantially. There are no reported side effects of a serious nature. "
According to him costing a standard treatment 75.000 million, including medications.
"Kolibri Medical wish to establish dialogue with the County Medical Officer and will abide by any objections to the treatment we offer if it becomes necessary."
KOLIBRI MEDICAL GROUP
Owned by Maasi Holding AS 95 percent (Maaseide family) and Colon AS 5 percent (Dagfinn Steinar Øgreid).
Economy: Turnover in 2014 was 37.4 million, profit before tax amounted to NOK 11.8 million.
Chronic fatigue syndrome ME (myalgic encephalopathy): Main Characteristics are rapid fatigue in muscles and central nervous system after minimal physical and mental effort as well as abnormal, long recovery for the recovery of muscle strength and intellectual capacity.
Source: ME Association

 

[deleder2k]

Please do tell if anything is unclear. I can help out.

 

[marpet]

deleder, do you know, if Rituximab improved/cured sleep problems?

 

[gregh286]

Cant understand why so many have sleep probs.
Im way too exhausted to stay awake.
Try phosphotylserine.
Wipeout job.

 

[deleder2k]

deleder, do you know, if Rituximab improved/cured sleep problems?

As far as I know Rituximab lead to a complete remission in a few patients. I.e no ME symptoms including sleep difficulties.

 

[Aurator]

Cant understand why so many have sleep probs.
Im way too exhausted to stay awake.

That's somewhat glib considering the severity of sleep problems in a number of ME patients. Some stay awake in spite of almost inconceivable exhaustion, either because of pain or because they are simply unable to sleep.

You don't say how much sleep you routinely get, but I've known people get as little as twelve hours sleep a week when they've started the week already exhausted. There doesn't seem to be a very good correlation between exhaustion and ability to sleep in some PwME. It sounds as if you may be fortunate in having escaped this particular scourge. And I don't believe the remedy you suggest would help many with hardcore sleep problems; if it did it's likely the really bad sleepers would already be on it and have waved goodbye to their insomnia.

 

[CFS_for_19_years]

Cant understand why so many have sleep probs.
Im way too exhausted to stay awake.
Try phosphotylserine.
Wipeout job.

In the first one or two years of this illness I had hypersomnia (needing to sleep 15 hours a day or so). I would get up after sleeping well and hard for 12 hours, get up, have a bowl of cereal and go back to bed for 3 hours. I was also very flu-ish and feverish at the time.

Now that I've been sick for 25 years, I'd say the insomnia hit hard about a looooong time ago.