Norwegian subject tells their story in mag.

[peggy-sue]

In "Chat" magazine (15th Dec, '11, Issue 50-51) in the "true life patient casebook" bit,

Elene Naeverlid of Bergen, Norway, tells her experience of ME and being a guinea-pig in the Rituximab study.

It doesn't seem that simple to be "cured" after all.

Initial precis of the story;
She started off with a 'flu which just didn't go away, in March 2001. Things were duly dreadful until she was offered the lifeline of being a guinea-pig in the pilot study, late in 2007.

I'm now going to copy the rest of the article. (please excuse their "artistic license" and rotten english)


"I-I'd be a guinea-pig?" I gulped.
Then 22, if I wanted my life back what choice did I have?

So, after a string of tests, I had my first intravenous dose.
Docs kept a close eye on me.
But instead of making a difference, nothing changed.

Until five months later, in May 2008...
"Morning," I chirped, as my parents mouths fell open. "I'm just taking the dog for a walk."

But sadly my excitement was only to be short-lived.

Over the following two years I suffered a series of relapses as docs tracked how my body reacted to the drug.

Then, in February this year they nailed it and I finally got my life back.

My parents could hardly keep track of me as I made up for lost time catching up with friends. Plus, I passed my school exams at last. "

[awol]

Well it may be more complicated than it seemed at first, but this actually gives more credibility to the results. If they were able to track and tweak, then that means that they know far more than just - "hmmmm let's see if this works. Yep. seems to but don't have a clue why.."

[peggy-sue]

I thought folk would find the "personal experience" side of things interesting and illuminating.

But it doesn't appear to be a "lightning process"  at all.

She is now 26, but first took the drug at 22.

It's also a huge leap forward that mainstream rubbishy mags are publishing this - instead of the usual codswallop about "miracle cures" for CFS.

[jimbob]

Well, if they've learned from their mistakes, maybe it won't take 4 yrs. If they can tweak it down to less than a yr, i'd be happy!

[Cytokine]

Well it may be more complicated than it seemed at first, but this actually gives more credibility to the results. If they were able to track and tweak, then that means that they know far more than just - "hmmmm let's see if this works. Yep. seems to but don't have a clue why.."

My guess is the main thing they might have been doing, is seeing how long between treatments she needed a booster to keep her well. Sadly, it'll be an important issue, both in risk AND price. It must have been very frustrating for her, because if she suddenly crashed back into illness overnight, she'd then need to get another set of injections and probably have to wait another 5 months before getting back to well again. Very frustrating, sitting there for 5 months, waiting for the day again, worrying it won't work a 2nd time.

All this is strong evidence that rubbishes the somatization hypothesis though.

I'm curious to know if the crash did happen overnight, or whether it came on as a gradual slide back into illness. I get the impression her recovery happened overnight, judging by the interview.

[liquid sky]

This is the study that quietly got away from them. You notice, the government in US or across the pond doesn't have much to say about it.

I do hope the Norwegians and others keep pushing trials through. They are monitoring immune function and changes caused by the drug. There may be a lot to learn from this.

And the best part, it is out of the hands of the British and US governments. 

[upbeat]

This is the study that quietly got away from them. You notice, the government in US or across the pond doesn't have much to say about it.

I do hope the Norwegians and others keep pushing trials through. They are monitoring immune function and changes caused by the drug. There may be a lot to learn from this.

And the best part, it is out of the hands of the British and US governments. 

Norway has a population similar to Minnesota, and is one of the wealthiest nations in the world... However, besides the marine industries (fishing, energy, shipping, tech, etc), they don't/won't fund much else. We should not get our hopes up thinking they will capitalize on this find, or commercialize it locally.  As cancer researchers they do have a network, but they probably won't get anywhere without the backing of bigger countries and/or big pharma.

[liquid sky]

The researchers may just find a way. They have done a lot with a little so far. I was not saying they would fund the drug for other countries, but they may just obtain some facts from their research that cannot be denied.

Proving ME is a biological disease rather than psychosomatic would leave the bigger countries with egg on their face. You never know what will finally break through the iron fisted grasp of the US and British governments.

By the way, are you Norwegian, so that you might know what priority they might give this finding?

[Cytokine]

Norway has a population similar to Minnesota, and is one of the wealthiest nations in the world... However, besides the marine industries (fishing, energy, shipping, tech, etc), they don't/won't fund much else. We should not get our hopes up thinking they will capitalize on this find, or commercialize it locally.  As cancer researchers they do have a network, but they probably won't get anywhere without the backing of bigger countries and/or big pharma.

I wouldn't be too pessimistic (it goes against your username, for a start ). Like you say, they're one few European nations these days that has any spare cash, so they might fund big studies.

Shame AfME didn't send some of the research money they had over to Norway, instead of funding half the questionable value studies they did fund.

[Frustration Personified]

Man i am so encouraged by the stuff i hear coming from all angles about Rituxan.

If Valcyte doesn't work, ive talked a lot with my doctor and, Rituxan, batter up.

[MEkoan]

Proving ME is a biological disease rather than psychosomatic would leave the bigger countries with egg on their face. You never know what will finally break through the iron fisted grasp of the US and British governments.

I believe we have seen the groundwork being laid for the psychosomatic shift.  They do seem to back up from time to time but the general drift has been from it's purely psychosomatic to it's initially somatic then becomes purely psycho because of secondary gain.  I think the next phase is it's purely somatic but they have a really bad attitude that we can help them with.

[SSX]

The researchers may just find a way. They have done a lot with a little so far. I was not saying they would fund the drug for other countries, but they may just obtain some facts from their research that cannot be denied.

Proving ME is a biological disease rather than psychosomatic would leave the bigger countries with egg on their face. You never know what will finally break through the iron fisted grasp of the US and British governments.

By the way, are you Norwegian, so that you might know what priority they might give this finding?

I know they are doing follow-up studies to find out how often, how long and so on the patients needs the drug to get the right effect of Rituximab.
I think they are doing more studies autumn 2012, maybe with new patients. A lot of Norwegian M.E sufferers wants to be included in the studies, but at the moment there are not room for that.

The researchers got 2 million NOK from the Norwegian gouvernment, by the way, to try to find biological markers for M.E. It`s a very small amount of money in this context, but still. Most of the Norwegian doctors think M.E is psycosomatic or doesn`t exist at all. (Shown in a new survey).

Hopefully other researchers around Norway and the rest of the world will follow Fluge and Mella!

[Frustration Personified]

I thought folk would find the "personal experience" side of things interesting and illuminating.

But it doesn't appear to be a "lightning process"  at all.

She is now 26, but first took the drug at 22.

It's also a huge leap forward that mainstream rubbishy mags are publishing this - instead of the usual codswallop about "miracle cures" for CFS.

Im gearing up for Rituxan and it was never billed to me as a miracle cure.

My doctor told me (and this is consistent with all reports i read) that very few people get better and stay better. It puts the illness into remission for anywhere from 5-15 months and then usually people need a new course of the drug.

Either way it sounds worth it to me but thats a judgement ill have to make after the treatment. I am in the late stages of Valcyte and im hoping the combination of following it with Rituxan and being young will lead to a longer, perhaps permanent remission.

But i dont think its been billed as a "miracle" cure so much as a big step forward.

If anyone is presenting it as an end all be all answer they are doing the drug and the public a disservice.

[christopher]

Im gearing up for Rituxan and it was never billed to me as a miracle cure.

My doctor told me (and this is consistent with all reports i read) that very few people get better and stay better. It puts the illness into remission for anywhere from 5-15 months and then usually people need a new course of the drug.

Either way it sounds worth it to me but thats a judgement ill have to make after the treatment. I am in the late stages of Valcyte and im hoping the combination of following it with Rituxan and being young will lead to a longer, perhaps permanent remission.

But i dont think its been billed as a "miracle" cure so much as a big step forward.

If anyone is presenting it as an end all be all answer they are doing the drug and the public a disservice.

FP,

i'm rooting for you 1000% with Rituxan. One way to accelerate advocacy efforts is to have people start becoming well enough to take care of themselves and also organize advocacy. Are you the woman in Canada working with Kogelnick?

edit: Sorry FP I just looked over your old posts to see that you are not a woman at all! But you are working with Kogelnik. There is a woman I believe from Canada who is blogging about her attempt to get treated with Rituximab as well.

I also see that you're the same age I was when I first got ill (I'm also male as well). It's been 6 years for me since then. If you'd like to talk about anything, feel free to PM me. Actually, I was 20 when I first got ill - was in the middle of planning a trip to Las Vegas with my friends for my 21st...still waiting to go!

[since]

I am in the late stages of Valcyte and im hoping the combination of following it with Rituxan and being young will lead to a longer, perhaps permanent remission.

I wonder if it might be better to do that in reverse order: Rituxan first, then starting Valcyte (or even Valtrex) after a few months...to keep the virus from coming back.