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

[Sasha]

Bear in mind that patients who have been successfully treated won't return to their original clinic.

 

[snowathlete]

Second hand anecdotal reports are pretty worthless in my opinion. If you speak with the patient themselves then there is a little more value as you can assess the details and accuracy a bit more, but even then...

The results from Norway to date are so good that I'd be surprised if Rituximab didn't pan out for a significant proportion of patients, but we'll have to see. If my circumstances were different then I'd probably give it a go, but I think you need to be sure you get treated at the right place, if such a place is even currently available.

 

[BurnA]

And yes - it also sounded unlikely to me that none have responded, but I do trust the doctor who told me this. And thinking about it, surely if people had travelled to America and got treatment and it had worked, we would know about it.

Hi fty, Can you verify this info in any way ? I wouldnt assume we would know anything one way or the other. Is there anyway to ask these patients to post about their experiences in US on PR ?

 

[FTY]

Hi fty, Can you verify this info in any way ? I wouldnt assume we would know anything one way or the other. Is there anyway to ask these patients to post about their experiences in US on PR ?

I'm sorry, there's nothing to verify, it was just a comment from a Dr. I have no way of knowing who these patients are. He said he didn't think that rituximab would be the answer but that we won't know until the results of the trial come out and he said that there may be a rituximab trail in US soon, maybe combining anti virals and rituximab. He was just expressing his opinion. I was just surprised that he wasn't more hopeful. It made me re-think my attitude and question a bit more that was the main thing, I really don't know very much about this.

 

[Hip]

I attend a CFS clinic in London, 30-40 other CFS patients have apparently travelled to America to receive treatment, NONE have responded. You would expect some to have had some kind of response.

Thanks for that info, which is very interesting.

Recently I read through most of the threads on this rituximab sub-forum, specifically looking for people who had tried rituximab, to try to gauge the response rate.

Out of the 12 people I found on these forums who were treated with rituximab, only one person so far has responded (@Rebecca2z, but she certainly responded very well — see this thread). Though of this 12, there are two people who only recently started rituximab, so it is too early to tell. And there were also three people who stopped posting, so their status is unknown.

But we can say that out of the 7 people for which we have the full data, only 1 has responded to rituximab.

I understand that Rebecca's ME/CFS appeared as a result of chronic Epstein-Barr virus infection, some 30 years ago. So Rebecca's ME/CFS appears to have been EBV-triggered (remember that EBV chronically infects B cells).

I doubt that a special subset exists in Norway but obviously I can't be certain.

It's conceivable that in Norway, there may have been an epidemic of ME/CFS caused by a particular pathogen, creating a specific subset of ME/CFS patients that respond well to rituximab.

There was in fact a large outbreak of giardiasis in Bergen, Norway in 2004 (giardiasis = intestinal infection with the parasite Giardia lamblia), and it was found that 5% of patients who came down with giardiasis in Bergen went on to develop ME/CFS. So Giardia lamblia appears to be a trigger of ME/CFS. (They also found a 39% prevalence rate for IBS in these Bergen giardiasis cases, 6 years later).

Remember that it is at the Haukeland University Hospital in Bergen where Fluge and Mella are conducting their rituximab trials.

Thus it is quite conceivable that Fluge and Mella may be treating many patients whose ME/CFS was originally triggered by Giardia lamblia, or patients for whom Giardia lamblia plays a significant role in their disease, because these patients caught Giardia lamblia during the 2004 outbreak in Bergen.

Now I read that Giardia lamblia is linked to autoimmune diseases, particularly with neurological autoimmune processes such as multiple sclerosis, ALS (Lou Gehrig’s disease), and Parkinson’s disease (ref: here, but unsure of the validity of this source). So when Giardia lamblia triggers ME/CFS, this parasite may be precipitating an autoimmune-driven type of ME/CFS.

This may explain why rituximab works so well for ME/CFS patients in Bergen.

 

[BurnA]

I'm sorry, there's nothing to verify, it was just a comment from a Dr. I have no way of knowing who these patients are. He said he didn't think that rituximab would be the answer but that we won't know until the results of the trial come out and he said that there may be a rituximab trail in US soon, maybe combining anti virals and rituximab. He was just expressing his opinion. I was just surprised that he wasn't more hopeful. It made me re-think my attitude and question a bit more that was the main thing, I really don't know very much about this.

Ok thanks.

It is true whenever I hear news from the US it doesn't sound as hopeful as in Europe. There have been rumours alright of a US trial with rtx and one would certainly consider that a postive - if the response was that poor it's hard to see them progressing with this.
They also seem to be more focused on the viral element than in Europe - just my opinion.

The thing about doctors expressing their opinion is we have no idea what it is based on so it is absolutely worthless. The best thing we have is the trial results from Norway and nobody can argue with them.

I would say, keep the optimism, concentrate on the facts or on hard evidence. If you do hear anything else ask for specific information, you'd be surprised how people back down when challenged, it's easy for a doctor to throw out a comment based on nothing but not so easy for them to justify it with specifics.

 

[BurnA]

Thanks for that info, which is very interesting.

Recently I read through most of the threads on this rituximab sub-forum, specifically looking for people who had tried rituximab, to try to gauge the response rate.

Out of the 12 people I found on these forums who were treated with rituximab, only one person so far has responded (@Rebecca2z, but she certainly responded very well — see this thread). Though of this 12, there are two people who only recently started rituximab, so it is too early to tell. And there were also three people who stopped posting, so their status is unknown.

But we can say that out of the 7 people for which we have the full data, only 1 has responded to rituximab.

I understand that Rebecca's ME/CFS appeared as a result of chronic Epstein-Barr virus infection, some 30 years ago. So Rebecca's ME/CFS appears to have been EBV-triggered (remember that EBV chronically infects B cells).





It's conceivable that in Norway, there may have been an epidemic of ME/CFS caused by a particular pathogen, creating a specific subset of ME/CFS patients that respond well to rituximab.

There was in fact a large outbreak of giardiasis in Bergen, Norway in 2004 (giardiasis = intestinal infection with the parasite Giardia lamblia), and it was found that 5% of patients who came down with giardiasis in Bergen went on to develop ME/CFS. So Giardia lamblia appears to be a trigger of ME/CFS. (They also found a 39% prevalence rate for IBS in these Bergen giardiasis cases, 6 years later).

Remember that it is at the Haukeland University Hospital in Bergen where Fluge and Mella are conducting their rituximab trials.

Thus it is quite conceivable that Fluge and Mella may be treating many patients whose ME/CFS was originally triggered by Giardia lamblia, or patients for whom Giardia lamblia plays a significant role in their disease, because these patients caught Giardia lamblia during the 2004 outbreak in Bergen.

Now Giardia is linked to autoimmune diseases, particularly with neurological autoimmune processes such as multiple sclerosis, ALS (Lou Gehrig’s disease), and Parkinson’s disease. 1 So when Giardia lamblia triggers ME/CFS, this parasite may be precipitating an autoimmune-driven subset of ME/CFS. This may explain why rituximab works so well for ME/CFS patients in Bergen.

Your points are well made. However the data on all patients is available in the open label phase 2 trial. I can't recall exactly but it can easily be determined in what year patients became I'll. Also, type of onset is specified too. There was a variety listed from what I recall. Finally, I would like to think fluge and mella would make a connection to this outbreak if they thought it was relevant.

 

[FTY]

Thus it is quite conceivable that Fluge and Mella may be treating many patients whose ME/CFS was originally triggered by Giardia lamblia, or patients for whom Giardia lamblia plays a significant role in their disease, because these patients caught Giardia lamblia during the 2004 outbreak in Bergen.

That is fascinating and would make sense.

I understand that Rebecca's ME/CFS appeared as a result of chronic Epstein-Barr virus infection, some 30 years ago. So Rebecca's ME/CFS appears to have been EBV-triggered (remember that EBV chronically infects B cells).

It's great to read about Rebecca's progress and valuable information but I also read that she has a few other diagnosis alongside CFS which may complicate things.

The thing about doctors expressing their opinion is we have no idea what it is based on so it is absolutely worthless.

I believe that my Doctor knows a lot more about this than I do and so I do attach some weight to what he says even if I don't want it to be true (I wanted to hear about a cure of course!)

 

[Marky90]

Your points are well made. However the data on all patients is available in the open label phase 2 trial. I can't recall exactly but it can easily be determined in what year patients became I'll. Also, type of onset is specified too. There was a variety listed from what I recall. Finally, I would like to think fluge and mella would make a connection to this outbreak if they thought it was relevant.

Yeah I was about to say..It*s certainly interesting though @Hip. We might be looking at subsets in ME/CFS with different types of autoimmunty e.g., maybe the giardia- and EBV-induced autoimmunity is more likely to respond to rtx?

Edit: Presuming they cause autoimmunity of course..

 

[Hip]

I can't recall exactly but it can easily be determined in what year patients became I'll.

A patient may not have actually developed ME/CFS during the 2004 Giardia lamblia outbreak, but may have picked up this pathogen at that time.

Then some years later, when they were exposed to some other ME/CFS risk factors, such a viral infection, that's when their ME/CFS may have manifested. Nevertheless, Giardia lamblia may be playing a causal role.

Also, given the higher prevalence of the Giardia lamblia intestinal parasite in the Bergen population as a result of the large 2004 outbreak, people in Bergen may still be contracting Giardia lamblia some years later, as a result of person-to-person fecal-oral transmission.


I guess the easiest way to confirm or refute this idea is to test the Fluge and Mella's rituximab responders for Giardia lamblia infection.

 

[Marky90]

A patient may not have actually developed ME/CFS during the 2004 Giardia lamblia outbreak, but may have picked up this pathogen at that time.

Then some years later, when they were exposed to some other ME/CFS risk factors, such a viral infection, that's when their ME/CFS may have manifested. Nevertheless, Giardia lamblia may be playing a causal role.

Also, given the higher prevalence of the Giardia lamblia intestinal parasite in the Bergen population as a result of the large 2004 outbreak, people in Bergen may still be contracting Giardia lamblia some years later, as a result of person-to-person fecal-oral transmission.


I guess the easiest way to confirm or refute this idea is to test the Fluge and Mella's rituximab responders for Giardia lamblia infection.

Agreed, but there`s still the problem of arguing causation between Giardia-infection and autoimmunity (which it might not even clear cut be). That seems to be the problem with EBV also, how do you study that.. Hard to do i would think.

 

[bthompsonjr1993]

For what its worth, I sent an email asking the clinic at Stanford what their results with Rituximab were like, and they responded, "Similar to published data... however it's early and there's a lot of variability across patients."

I thought I deleted their response on accident, so I sent another email asking the same question, and this is how they responded,
"Thanks for your inquiry. Please see Dr. Kogelnik's response below:
This data is very rough, but basically we are seeing results that are on par with the Norwegian published data.
AK"

 

[Marky90]

For what its worth, I sent an email asking the clinic at Stanford what their results with Rituximab were like, and they responded, "Similar to published data... however it's early and there's a lot of variability across patients."

I thought I deleted their response on accident, so I sent another email asking the same question, and this is how they responded,
"Thanks for your inquiry. Please see Dr. Kogelnik's response below:
This data is very rough, but basically we are seeing results that are on par with the Norwegian published data.
AK"

Great! Thanks

 

[BurnA]

For what its worth, I sent an email asking the clinic at Stanford what their results with Rituximab were like, and they responded, "Similar to published data... however it's early and there's a lot of variability across patients."

I thought I deleted their response on accident, so I sent another email asking the same question, and this is how they responded,
"Thanks for your inquiry. Please see Dr. Kogelnik's response below:
This data is very rough, but basically we are seeing results that are on par with the Norwegian published data.
AK"

This is really good information to have.
Straight from the horses mouth too !

 

[Hutan]

Out of the 12 people I found on these forums who were treated with rituximab, only one person so far has responded (@Rebecca2z, but she certainly responded very well — see this thread). Though of this 12, there are two people who only recently started rituximab, so it is too early to tell. And there were also three people who stopped posting, so their status is unknown.

@funkyqueen was getting some benefit I think? Perhaps only recently started?

 

[Hip]

@funkyqueen was getting some benefit I think? Perhaps only recently started?

Funkyqueen is one of the two people for whom it's too early to tell.

 

[jimells]

Even if the Number Needed to Treat were as "bad" as three - that would be better than the best treatment for how many other diseases? Most of them?

 

[Tammy]

ACross the board, most people who get better during trials get better for reasons other than the treatment

What? Could you give an example...............what would some of those reasons would be? How did you come to this conclusion? This would seem like a daunting task to prove considering so many variables........and sorry if I am misunderstanding but are you specifically talking about rituximab trials?

 

[Jonathan Edwards]

What? Could you give an example...............what would some of those reasons would be? How did you come to this conclusion? This would seem like a daunting task to prove considering so many variables........and sorry if I am misunderstanding but are you specifically talking about rituximab trials?

I am not talking about rituximab trials. In those in most diseases the effect of the drug is so clear cut that it is the main reason for improvement. The problem with ME is that the lack of objective measures makes things less clear cut, so the phase II trial in Norway is more difficult to interpret.

Most trials are of drugs that turn out not to be that good, or no good. In those trials the main reason why people seem to get better is probably that symptoms and signs that go up and down in their disease and people are bound to get included in trials when they are bad - so on average will be better at the end of the trial just from the ups and downs of the disease. Getting better in trials is also very often a reflection of shared optimism by patient and researcher - merely an appearance of getting better. On top of all that there is the real placebo effect of an intervention making people actually feel better and the reverse placebo effect of patients saying they are better to make the researcher feel better. How much each of these contributes varies with the sort of disease, the sort of researchers, the culture of the country you live in and all sorts of other things it seems.

 

[BurnA]

Thanks for that info, which is very interesting.

Out of the 12 people I found on these forums who were treated with rituximab, only one person so far has responded (@Rebecca2z, but she certainly responded very well — see this thread). Though of this 12, there are two people who only recently started rituximab, so it is too early to tell. And there were also three people who stopped posting, so their status is unknown.

But we can say that out of the 7 people for which we have the full data, only 1 has responded to rituximab.

Am I the only one who is surprised we don't have more people posting on PR about their RTX experience ? If OMI are seeing similar results to Norway and if people are travelling from around the world to go there I would have expected more people to post about their experience ? I am not saying I don't believe they are seeing results I am just surprised more people aren't talking about it - good or bad. Maybe PR is not as popular as I like to think !