Astounding Norwegian research breakthrough with Rituximab can solve CFS mystery!!!

[redo]

Only one with placebo got big improvement, one got moderate. The UK press is what we make of the UK press. We ought to contact journalists and get our angle out. That's what Wessely have done, and that's what we should get better at... Especially now.

 

[wdb]

I think a problem in this paper will be the lack of biomarkers for improvement.

Apart from the rituximab induced drop in CD20 cells, all the improvement had to be measured by fatigue scales, physician reported or self reported.

Though unlike some ridiculous un-blinded ME/CFS trials where subjective measures are a huge problem this one was double blinded, which if done properly should mean that any bias or placebo effect picked up in the subjective measures would at least be equally distributed between the two groups. My only concern would be that saline might not be the ideal placebo as it would not have comparable side-effects to the treatment so might allow the participants to figure out which group they are in.

 

[currer]

As far as I could see at the conference the researchers, Bell, Mikovits and Fluge/Mella, and the others were all sharing information.
They were all stimulated and excited by this opportunity.

Judy Mikovits praised the Norwegian study, calling it "that beautiful study", but she also pointed out that she felt the retrovirus was in the CD20 B cells.

There was no feeling that the researchers were in competition or that their findings excluded each others findings. They were trying to find out the truth about our illness and were respectful of each others findings. They realise they do not know the whole answer yet, but were immensely and visibly excited by the prospect for a new turn in medical research, maybe not just limited to ME, but to include other illnesses too.

If this is spun as XMRV is dead or as anti a viral etiology, or any other etiology, all I can say is - this is spin as this was not evident at the conference.

 

[Enid]

Redo your post 20 - in case someone pops in ahead

Just how is the big question now I think. Most ME information is already out on all the major Charity sites, and each as we know (not inexhaustable time and energies) is working with different emphases/aspects/promotions in addition to providing support and guidance for sufferers. W through his position at the Science Media Centre influences the Media (that's what it's for) and from the latest orchestrated attack on ME suffers has solely gained the ears of certain journalists and publications. Not difficult to spot partisanship with the constant ignoring of eg. Prof Hooper's writings revealing the science in ME.

Any thoughts about the way forward ?

(Apologies off-thread - back to Norwegian breakthrough !)

 

[Esther12]

Any good quality CFS research is good news - whatever the results and what they may mean.

As someone else pointed out earlier, PACE has left me far more sceptical of claims about 'significant improvements' - lets wait and check all of the details before getting too excited. On the other hand - these researchers don't have the history the PACE ones did, so I'm much more hopeful that we can trust their results, and that this will lead on to something meaningful for many with CFS.

 

[KFG]

Hi Currer,

I think it would be wise to keep the subject of "XMRV" away from the Rituximab one. At the time of the conference you mention, the Norwegian researchers were not aware that Dr Mikovits' research would be the subject of investigation in the future. Incidentally, Dr Mikovits said it was "in the CD20 cells" ? I thought it was "in the tissues" ? But it didn't need to be "in the tissues" for the Science publication ? It never ends....

This ( Rituximab ) is a terrific piece of science. "XMRV" has been anything but. It would be unwise to confuse the two. For forum purposes of course, that's exactly what people can, and no doubt, will do !

Hope you're doing OK.

 

[KFG]

​

Esther12 said: ↑​

Any good quality CFS research is good news - whatever the results and what they may mean.​

​

As someone else pointed out earlier, PACE has left me far more sceptical of claims about 'significant improvements' - lets wait and check all of the details before getting too excited. On the other hand - these researchers don't have the history the PACE ones did, so I'm much more hopeful that we can trust their results, and that this will lead on to something meaningful for many with CFS.​

​

​

Esther12, seriously, mentioning this research in the same sentence as the PACE trial.....come on ! These are cancer specialists who made a chance discovery and have followed it up in the most professional manner possible. The PACE trial - I wouldn't use it as toilet paper.

 

[Esther12]

Esther12, seriously, mentioning this research in the same sentence as the PACE trial.....come on ! These are cancer specialists who made a chance discovery and have followed it up in the most professional manner possible. The PACE trial - I wouldn't use it as toilet paper.

I really didn't mean to imply that there's any reason to think that there's a problem with this study, or impugn the researchers involved in any way... but I just can't trust CFS research. If it was properly double-blind, then that should prevent a lot of problems, but I'm not comfortable getting excited about any paper until after it has been pretty thoroughly picked apart, and ideally replicated by those who start with opposing assumptions about CFS.

 

[KFG]

Esther12 said: ↑

I really didn't mean to imply that there's any reason to think that there's a problem with this study, or impugn the researchers involved in any way... but I just can't trust CFS research. If it was properly double-blind, then that should prevent a lot of problems, but I'm not comfortable getting excited about any paper until after it has been pretty thoroughly picked apart, and ideally replicated by those who start with opposing assumptions about CFS.​

You are 100% correct, Esther. Thank you for curbing my enthusiasm, seriously ! It is sensible to be cautious - I think I've been so down about the "XMRV" business that I am perhaps treating this news a bit too enthusiastically. Yes, replication by groups elsewhere : that's most definitely the next step. Boy, those cohorts better be well chosen....​

 

[Esther12]

You are 100% correct, Esther. Thank you for curbing my enthusiasm, seriously ! It is sensible to be cautious - I think I've been so down about the "XMRV" business that I am perhaps treating this news a bit too enthusiastically. Yes, replication by groups elsewhere : that's most definitely the next step. Boy, those cohorts better be well chosen....

I understand your desire for enthusiasm 100% too! There are a few things going on in CFS I'm vaguely hopeful about, and this is now high on that list, but it's best to remember how results like these could just be indicative of nothing.

 

[currer]

All I can say is - buy the DVD.

It will help Invest in ME - always a good cause. They deserve some financial benefit for putting on this conference.

Esther, you are right in that riuximab cannot be seen yot as a cure. we do not know whether it is safe for people with ME.

But do not be misled.

The response to riuximab was dramatic.

 

[currer]

Hi Currer,

I think it would be wise to keep the subject of "XMRV" away from the Rituximab one. At the time of the conference you mention, the Norwegian researchers were not aware that Dr Mikovits' research would be the subject of investigation in the future. Incidentally, Dr Mikovits said it was "in the CD20 cells" ? I thought it was "in the tissues" ? But it didn't need to be "in the tissues" for the Science publication ? It never ends....

This ( Rituximab ) is a terrific piece of science. "XMRV" has been anything but. It would be unwise to confuse the two. For forum purposes of course, that's exactly what people can, and no doubt, will do !

Hope you're doing OK.

I am fine thanks and relieved the Norwegian work finally came out. It was a long wait and I got to wondering if it would ever see the light of day.

With regard to confusing XMRV and rituximab treatment -

The Norwegian researchers investigated individual sufferers who had been sick many years and were pretty much housebound - quite severe, anyway, but of course they saw them late after onset of the disorder.

Dr Bell was also at the conference and gave a moving talk on the follow-up of his Lyndonville cohort, who all became sick following an infectious outbreak that spread widely through the population, and who became chronically ill as a result and are now adult.
There is no doubt they have true ME.

We have the problem of reconciling these two facts, - ME can occur in epidemics, and it responds to immunomodulation.

Are autoimmune diseases epidemic? Do we see outbreaks of rheumatoid arthritis?
(Rituximab is also used for RA)

Obviously HGRVs are not proven. But we need to look further than an "autoimmune" answer.

If ME is autoimmune something is priming the immune system to malfunction, which is latent in large numbers of the population.

Now this may not be a retrovirus. But you need to look for a widespread agent which relies on a trigger of some kind.
It could be that many people have an underlying immune abnormality, which did not exist a couple of generations ago.

What could that be? And why?

And more importantly, Do you think a lot of money will be put into researching this question?

Whoever is rash enough to come along and try to find the answer to this question will find as many obstacles in their way as Judy Mikovits did with her retroviral research.

This is what angers me most and is why I defend Dr Mikovits research.
Please do not question her integrity. (Sorry about that KFG, on reflection I think I misinterpreted you)

 

[Enid]

Just want to make the observation that rephrasing the SW classic - scientists are frightened to research ME for fear of death threats is now appropriate - and for him to revisit for any truth in the matter.

 

[Sing]

I greatly hope that some researchers plunge into the questions and interactions between Rituximab and ME/CFS, and hope that the time will be short.

However, if any of us have diagnoses such as kidney disease (see my post 42) or other conditions already known to improve with Rituximab, it may be possible to get treated with it before all the needed research is done for ME/CFS. And, as with the Norwegian patients who greatly improved, this information can be fed back into our collective knowledge--- Here may be another way into effective treatment, as well as demonstrations to help further our general understanding.

 

[redo]

Judy Mikovits praised the Norwegian study, calling it "that beautiful study", but she also pointed out that she felt the retrovirus was in the CD20 cells.

CD20 is a antigen which is on the surface on the B cells. I am sure she rather meant inside the B cells

 

[Esther12]

it's a very professional study done by cancer specialists who ultimately don't give a damn about CFS ( which is exactly how I like it ).

I feel much more confident in a study coming from those with no interest in CFS too!

 

[redo]

A good colleague of them got her life ripped to pieces thanks to this disease, so I have no reason to doubt that they care. She was one of the 3 in the first pilot study. (The story can be found in one of the first links in this thread)

 

[justy]

Hi, all.

Having now read the full paper, I note that it was reported that two of the patients who received Rituximab, and one who received the placebo (saline solution) were still going strong a year later and were back at full-time work (and by then their B cells had come back up). So how do I explain that? Well, I'm guessing that shutting down the inflammation and the concomitant oxidative stress in the patients who received Rituximab must have given glutathione such a big boost that it was able to break the vicious circle and restore the methylation cycle and the immune system to normal operation by the time the B cells came back up. In the past, I don't know of anyone who was able to turn things around by boosting glutathione, but maybe the inflammation prevented it from going high enough. How about the one who recovered after receiving only saline? I don't know. That's pretty amazing. It's well-known that many PWMEs/PWCs have what has been called a "mild" case of diabetes insipidus (not to be confused with diabetes mellitus), and that involves low blood volume. Putting in some saline has helped a lot of patients temporarily. I don't know how it could produce a permanent fix. So that's a puzzle.

I sure wish these researchers had monitored glutathione in these patients! Note that they write, "Thus, we believe that B-cell depletion targets a central player in the pathogenesis of the CFS disease, directly or indirectly." I suggest that this central player is glutathione.

Best regards,

Rich

Hi Rich, i have just finished watching the three hours of your swedish talk (thank you) and then went straight on to the presentation of the Rituximab trial at the Invest in ME conference, which i have to say was very exciting and inspiring.
You note that one of the patients was completely well a year later biut had only recieved the placebo, the researchers noted in the talk that this patient did not meet the Canadian diagnostic Criteria and was the only patient in the trial who did not, they presented this as a possible explanation for the result.

If as you point out low Glutathione is the major problem in M.E (i simplify so that my brain can function) then surely this could be rpoven by giving IV infusions of Glutathione. I realise this would not lift the block but surely would prove what would happen once you did lift the block. Is this possible?

 

[FancyMyBlood]

I'm so incredibly happy with this paper for a number of reasons. It couldn't come at a better moment now the XMRV hypothesis is dead. It also opens a whole new perspective to ME/CFS research and we can even hope for a cure in the next coming years. Who would've thought that 2 years ago?!

Even if both of the Lipkin papers and the Montoya pathogen study don't find anything, there is still so much to discover in this awful disease. Hopefully this results in a huge influx of resources and researchers. There are so many things going on right now and I'm excited to see what's going to come out of it. After 6 years of having this awful disease and seriously contemplating euthanasia/suicide 6 months ago this gives back some hope!

edit:

Already the Kavli foundation in Norway has commited itself to do more research into ME/CFShttp://www.tv2.no/nyheter/innenriks/kavlifondet-gir-penger-til-meforskning-3615901.html)

 

[Marco]

Hi Rich, i have just finished watching the three hours of your swedish talk (thank you) and then went straight on to the presentation of the Rituximab trial at the Invest in ME conference, which i have to say was very exciting and inspiring.
You note that one of the patients was completely well a year later biut had only recieved the placebo, the researchers noted in the talk that this patient did not meet the Canadian diagnostic Criteria and was the only patient in the trial who did not, they presented this as a possible explanation for the result.

If as you point out low Glutathione is the major problem in M.E (i simplify so that my brain can function) then surely this could be rpoven by giving IV infusions of Glutathione. I realise this would not lift the block but surely would prove what would happen once you did lift the block. Is this possible?

I could be wrong having just skimmed the full paper, but I thought I picked up that the two who appeared fully recovered from either the Rituximab or placebo arms had been ill for less than a year.

This might suggest a scenario of a gradual decline is glutathione reserves which might also be consistent with a gradual onset course of illness.