Rituximab Study Update: Researchers Focus on Rare Gene Variant

[Tony L]

Well you have to be impressed with these Norwegian guys. The way they have taken an observation relating to a different field of research (one on most researchers avoid list) and are running with it. Credit to those participants too. Not satisfied with the trial they are even conducting a genetic study of predisposition. Brilliant.

If their trial confirms that B cell depletion can bring remission in ME that will be big news. As we wait for these result to come, I hope that the planned US programs will take off and kick start the expansion of ME research. We really need to understand the pathology of our disease, to identify specific targets for therapy. For example, if Rituximab points to the potential of immunotherapy for ME and we have a clearer understanding of our immunopathology then therapies designed specifically for ME (and its subgroups) could be produced.

 

[EYAKLLE]

I think the prevailing consensus now is (although it displeases some)frontline rituximab is dangerous, inappropriate,and could stop patients benefiting from arv's. So it could cull the patients like lambs.

As far as the uk trial is concerned :
If the uk trial is a big botch then ME will be the laughing stock and it will be near impossible to run another pharmaceutical trial. It s like a slope that has been created to be shown to be a good idea but in fact it is not. Even the psychiatrists agree to trying rituximab frontline as the virologists seem to naievely or ignorantly or consciously/unconsiciously misleadingly give their thumbs up to it but the psychs would just love to say 'oh dear'..Total mess really.

The fault lies with those who diluted and relegated true ME (1 in 250) into one big CFS (4 in 250). TraGic traGedy in motion n being played out.Cytokine Chemokine studies from Columbia which have everyone on the wide speCtrUm radar just as bad. Untargeted garbage all round. Masterminded in London. Sealed by the cdc. Sold worldwide.

True ME is a RV.

Time for the losers to write their defeat speech sprinkled with phylogentic syntax any which way they want it. Their time is up.

They knew it in the 90s. They always suspected a rv. The band plays on. They just strike the drums with their sticks from time to time n RELEASE a cytokine here n a chemokine there to pleasure the masses.Totally random.Take 20 healthy n 20 unhealthy people off the street n their cytokines n chemokines will be doing different things at different times and unexpectedly so too.

((The few frontline rituximab responders perhaps had lymphomas too/only? Or other things too? )). Discussion. Discussions. How inTereSting. Oh oh my oh ! How goshingly interesting n entertaining. Hope for ALL!!! Yeah...... Give me a breaK.

 

[Who Me?]

I vaguely remember a story but I have no idea who that is... I'll let it simmer for a while in my brain, who knows, maybe I'll remember!

Sorry thought it was you. Someone I know on both forums is friends with him.

 

[Cort]

I have been doing more research and I am wondering if ME is some linked to Autoimmune Encephalopathy or ADEM. Both this illness respond to immunotherapy and both present clinically like both illness when they are not in there most severe forms.

Here are the symptoms: It's really a nasty disease

Autoimmune encephalitis (AE) can produce a very wide range of neuro-psychiatric symptoms. A major challenge in diagnosis is that different symptoms may appear at different times and different levels of intensity, so that the disease may mimic many other disorders. Some patients initially present with either neurological or psychiatric symptoms, further complicating diagnosis.

Symptoms associated with AE can include:

• weakness or numbness of part of the body
• loss of balance
• slowed or blurred speech or loss of ability to speak
• ataxia
• involuntary movements
• distorted vision
• cognitive impairment
• memory disturbance
• decreased level of consciousness – to the point of unresponsiveness, catatonia or coma
• seizures – (either self-evident, or smaller seizures that show up on an eeg reading)
• partial or complete loss of appetite for long periods
• food and drink tasting inedible or triggering nausea
• excessive eating without feeling sated
• agitation
• inability to sleep
• loss of inhibition
• rapid, pressured, or involuntary speech
• hallucinations (visual or auditory) and delirium
• paranoid thoughts
• severe anxiety

An otherwise unexplained mixture of the above neuro-psychiatric symptoms may be a clue that the underlying cause is autoimmune encephalitis.

 

[Cort]

Well you have to be impressed with these Norwegian guys. The way they have taken an observation relating to a different field of research (one on most researchers avoid list) and are running with it. Credit to those participants too. Not satisfied with the trial they are even conducting a genetic study of predisposition. Brilliant.

If their trial confirms that B cell depletion can bring remission in ME that will be big news. As we wait for these result to come, I hope that the planned US programs will take off and kick start the expansion of ME research. We really need to understand the pathology of our disease, to identify specific targets for therapy. For example, if Rituximab points to the potential of immunotherapy for ME and we have a clearer understanding of our immunopathology then therapies designed specifically for ME (and its subgroups) could be produced.

I agree - you really have to impressed with these guys. They come from a different field and here they are in the midst of the multi-dimensional project on ME/CFS. They've added substudies and now a genetic study and they've also tried different types of drugs. (I wonder if they're doing any cancer work at all now.)

There's been reports that the NIH may do a Rituximab trial. If it is planning to do that we could know this month (hopefully) when the Working Group gets back to us on their strategic plan.

 

[Cort]

I think the prevailing consensus now is (although it displeases some)frontline rituximab is dangerous, inappropriate,and could stop patients benefiting from arv's. So it could cull the patients like lambs.

If the uk trial is a big botch then ME will be the laughing stock and it will be near impossible to run another pharmaceutical trial. It s like a slope that has been created to be shown to be a good idea but in fact it is not. Even the psychiatrists agree to trying rituximab frontline as the virologists seem to naievely or ignorantly or consciously/unconsiciously misleadingly give their thumbs up to it but the psychs would just love to say 'oh dear'..Total mess really.

The fault lies with those who diluted and relegated true ME (1 in 250) into one big CFS (4 in 250). TraGic traGedy in motion n being played out.Cytokine Chemokine studies from Columbia which have everyone on the wide speCtrUm radar just as bad. Untargeted garbage all round. Masterminded in London. Sealed by the cdc. Sold worldwide.

True ME is a RV.

Time for the losers to write their defeat speech sprinkled with phylogentic syntax any which way they want it. Their time is up.

They knew it in the 90s. They always suspected a rv. The band plays on. They just strike the drums with their sticks from time to time n RELEASE a cytokine here n a chemokine there to pleasure the masses.Totally random.Take 20 healthy n 20 unhealthy people off the street n their cytokines n chemokines will be doing different things at different times and unexpectedly so too.

((The few frontline rituximab responders perhaps had lymphomas too/only? Or other things too? )). Discussion. Discussions. How inTereSting. Oh oh my oh ! How goshingly interesting n entertaining. Hope for ALL!!! Yeah...... Give me a breaK.

The good news is that we actually have a nice big, apparently very well conceived Rituximab trial - and we will actually know - in about a year and a half I guess it will be...How nice that will be.

 

[EYAKLLE]

The good news is that we actually have a nice big, apparently very well conceived Rituximab trial - and we will actually know - in about a year and a half I guess it will be...How nice that will be.

Haven't people been harmed on this medication ?
There is a GLARING gap between the clinical reality and these rv definitive studies n rituximab medicine trials. Very very odd indeed. How many Ramsey defined/type ME ers are there in that london trial ? Doesnt matter anyway cos not the right med for ME anyway. Might just be chilly pepper Columbia uni type CFS ers cytokining here on a Monday n chemokyning there on a Frymybrains out Friday with rituXimab ...
They re just having a ball in there !
One very last time ! A cocktail that pleases ALL !!!!

 

[Remy]

@Remy new puppy pic! Is that the same dose as in the study? Or is it a smaller dose? That would be interesting to see if subclinical dose of rtx does anything.

Yes it's the same as the study dose, as far as I can see.

 

[Who Me?]

Yes it's the same as the study dose, as far as I can see.

I sure would like to see something done with a subclinical dose. See if there are any results with that. You never know how things will work.

 

[Justin]

Here are the symptoms: It's really a nasty disease

I agree but isnt ME as described by Ramsay, Dowsett, Hyde, Whitney Dafoe, Jamison...etc.....

ME is a Neurological Disease defined by the WHO.

Many cant walk, talk or move...the ones with severe ME...

If you look on ADEM forums some people do not have the massive coma like features but still have ADEM.

All that I am implying is that recovery could be possible if early interventions were made.......

 

[Who Me?]

All that I am implying is that recovery could be possible if early interventions were made.......

We've known that. The earlier you get at it the better off. But I am friends with 3 people I met on a forum 20 years ago. There wasn't much back then in the way of treatment.

All three of them are sill working full time and leading relatively normal lives. I'm the only one who has actively pursued treatment and yet I'm the most sick.

There's no explaining that.

 

[bobby]

All that I am implying is that recovery could be possible if early interventions were made.

The earlier you get at it the better off.

I wonder about that sometimes... Some people get better, others stay sick. If you get better, you're usually gonna get better in the first years. But does that have anything to do with treatment? Some people just get better without doing anything. Maybe they're even a different subset. I think if you were supposed to stay sick, you'll stay sick whatever you do. If you are in the 'get better' subset, you'll get better whatever you do. Right?

 

[Justin]

I wonder about that sometimes... Some people get better, others stay sick. If you get better, you're usually gonna get better in the first years. But does that have anything to do with treatment? Some people just get better without doing anything. Maybe they're even a different subset. I think if you were supposed to stay sick, you'll stay sick whatever you do. If you are in the 'get better' subset, you'll get better whatever you do. Right?

Maybe......but that being said...I have heard of those treated with IVIG early who are near normal; Dr Petterson says this as well. I have also heard of remissions from Valcyte. I have heard remissions from Ampligen and Rituximab.

Their is some serious subsetting to be done.

What I feel is the most vital aspect is to study the extreme severely ill and see if that can be replicated in severe, moderate and mild cases.

The funding has got to start and in a big way...

 

[Justin]

We've known that. The earlier you get at it the better off. But I am friends with 3 people I met on a forum 20 years ago. There wasn't much back then in the way of treatment.

All three of them are sill working full time and leading relatively normal lives. I'm the only one who has actively pursued treatment and yet I'm the most sick.

There's no explaining that.

Did they have treatment? Do they even have the same illness?

Working full time with this seems to be an absolute rarity...that is if you have ME...

I would live to see a symptoms Poll.

Further when I read the book 50 CFS recovery stories I was like really is this the same illness?

ME is classified as a Neurological illness and I feel as though if your presentation is different how could it be ME?

 

[Tony L]

I think we will begin to understand why some recover and others do not when we understand more about the way this disease begins and progresses.

Combine this with genetic studies and we will be able to identify genes whose variants are involved in (responsible for) further progression of disease.

I think in terms of weak links in the body at key points of physiological function. Also think of cascade effect.

We might share a common starting point for disease to begin. Once disease has a foothold it will start to apply pressure to another (potential)weak link. This could be an ion channel, signalling protein............ expressed in a cell type with key regulatory function, perhaps. One subset of sufferers have a fully functioning gene at this point and so disease is held off and recovery is possible. Another subset may have gene variants at this point so that the protein (ion channel, signalling molecule.....whatever it is) expressed is not fully functional, allowing the progression of disease........and so on (the cascade continues) maybe to a point in some individuals where recovery is no longer possible (at least with current medical knowledge/practice).

That is not to say that use of medication cannot help. On the contrary, medication could send the cascade down a less harmful route or perhaps stop (freeze) it at some point.

So the casade/pathways of disease progression will vary in each person. This can explain the variability in presentation of disease. Subsets may be predisposed to a certain level of illness, depending upon the nature of their inherited genetic weak links.

Anyway that's my thinking. A complex genetic puzzle to work out!

 

[Who Me?]

As I said, all diagnoses, we all took a different path with treatment or none at all and just treated symptoms.

It's just an observation.

Oh and from what I remember there were highs and lows but all of them continued to work and still do. One I know uses crazy alternative stuff, two did pretty much nothing. One said cleaning up his diet helped.

 

[EYAKLLE]

As far as the uk trial is concerned :

Logically,any rituximab trial (especially one as big as the london one)should ethically be done way after an arv trial, as rituximab is way way potent. Just cos smthg works n hits a big wide target, doesnt mean it's good4u..... u dont just have a ball n bash everything in there to oblivion. Not v.smart is it? It's on the record. If they slaughter or incapacitate or harm or hurt those undefined so-calledME/cfs/fatigued patients in london with rituximab they will have questions to re-answer that have been asked n there will be no excuse.What are they subsetting in there?? They re not subsetting disease,just fancy markers that anyone can have on a rainy Columbia day while chewing chilly peppers. Clumsy. And nobody cares if it s a big botch up. All they ll say is OH DEAR they wanted to be brave n show they have a real disease. A quick fix at best,possibly good for some true ME patients(but it'd've to be redesigned with real ME dr's), but let me be clear, I dont think it s going to pan out for true ME, given the history of the true disease n anyway it s so undefined n easy to dilute. A hell of a risk for those running the trial. If they had any brains, they d withdraw n realize the intention is to shock n damage so nobody goes near ME research again. Sickening. The stuff of Stephen King. The Minister of Health needs to be informed. It must be stopped. Poor design. Unnecessary. Even in those in whom it will work they won't know why n what for n how. It s unwarranted n dangerous n critically they are NOT ME experts. The P.I. is NOT an ME expert.

Make it known. For the uk trial

 

[Anonymous1]

I have also read (probably over a year ago now, or maybe 2 or more years ago) that rituximab side effects can be severe including lasting organ damage and death!

I dont understand or have much knowledge about dosage given and side effects.

 

[San Diego]

Thus far, the gene appears to be doing what they expected it to do, and they believe it may help us understand what is happening in ME/CFS.

This seems pretty big. I sure hope we don’t have to wait until 2018 to hear more!

 

[EYAKLLE]

Lingering infections that people get over and recover on other meds must be just post viral in that three year window maybe. In those in whom they dont work it may be ME.
It's seriously important not to mix up true ME with those other states