Tweeting the Invest in ME Conference: Rituximab, Biomarkers, Progress....What We Learned

Jorgen Jelstad is a Norwegian journalist with a family member who has a severe case of ME/CFS. He tweeted the Ottawa conference last year and he tweeted the Invest in ME conference yesterday.

Suggesting a certain excitement and vigor is present, he reported that a brain-storming session occurred two days prior to the conference.

From Dr. Peterson (Simmaron) to Dr. Gradisnuk (PHANU) to Dr. Baraniuk, the one day conference was packed with intriguing speakers but none were more eagerly awaited than Dr. Fluge and Dr. Mella's talk on Rituximab.
Rituximab


Fluge and Mella appear to be getting good results in their larger Rituximab (Rituxian) followup study. They reported the responses have ranged from slight to moderate to major with 'quite a few' major responses - and some people completely recovering (at least temporarily. In an attempt to avoid the relapses that occurred after going off the drug in the past some patients are staying on the drug for long periods of time)

No one drug could ever work for everybody in as heterogeneous disorders as CFS but the report that some patients were completely recovering in this oh so difficult to treat disorder is exciting. Fluge are Mella have some strong evidence but they are not calling ME/CFS an auto-immune disorder just yet. Fluge stated, though, that they believe their evidence indicates "ME/CFS is a defined biological disease in at least a subgroup of patients."

Mella reported that 40% of patients have relatives with autoimmune disorders - a startlingly high number- and a further indication of a strong genetic component to this disorder.

In collaboration with the Alison Hunter Memorial Foundation Invest in ME has created an Autoimmunity Clinical Working Group to support research into autoimmune aspects of ME/CFS. Encouragingly the risk of side effects with this very strong drug appears to be quite low according to Mella.


The first PlosOne Rituximab paper has been extraordinarily well-read with 35,000 reads comparted to the 1,000 a typical cancer study gets. That, of course, indicates ME/CFS continues to a subject of interest (if very low funding) and bodes well for the possibility of further studies. On that subject....




Open Medicine Institute Doing Rituximab Trial


It's been rumored for months and now we know its true. The big news on the Rituxumib front was the statement from Dr. Kogelnik that the Open Medicine Institute has begun an off-label pilot study of Rituximab in CFS. The Open Medicine Institute has been making waves; it's collaborating with a variety of top ME/CFS physicians and is the first group to announce a Rituximab trial post Mella/Fluge. Expect to hear more from the Open Medicine Institute soon.

A survey of researchers and ME/CFS professionals on the field five years from now suggested most do believe Rituximab will be an accepted treatment for ME/CFS but they differed on how many people the drug will work for.

Rituximab is a very expensive drug but Rituximab's manufacturer does provide deep discounts for people with lower incomes. Find out more here.


First Rituximab... Now Etanercept?


The first study examining Etanercept's (Enbrel's) effectiveness in ME/CFS is underway in Norway under Fluge and Mella. Another autoimmune drug, Etanercept block the effects of an immune factor called tumor necrosis factor ( TNF-A) which becomes upregulated during infection. Some studies have found high TNF-a levels in CFS and others have not but Fluge and Mella clearly have found them in some patients. They are giving the drug to some patients who did not respond to Rituximab.


Technology Opening Windows into CFS


Kogelnik believes the field is beginning to reach a critical mass with mainstream researchers showing interest as technological advancements unveil critical aspects of this disorder. Dr. Kogelnik first got involved with ME/CFS when he worked on Dr. Montoya's valcyte trial. He stated he feels 'a huge sense of optimism' now.

It may be that CFS was doomed to limbo status until the technology able to reveal it was developed. With the CFI, CAA, CDC and WPI all employing cutting-edge technologies to look for pathogens this will be an interesting year. As researchers data mining capabilities improve they will have a better and better shot at understanding complex disorders such as chronic fatigue syndrome. On the data-mining front the CAA's Logosomix and Biovista projects could provide entirely new perspectives on biomarkers and drugs for ME/CFS over the next year or so.
Dr. Peterson of Simmaron Institute


Mark June 30th on your calendar as Dr. Peterson reported the Lipkin XMRV study featuring Dr. Mikovits will released on that date. Some 2 1/2 years after the Science paper was published the XMRV story will reach some sort of conclusion this month.

Dr. Peterson is very high on the CDC's CASA project which is having CDC researchers pore over ME/CFS physicians patient charts to determine a) how different physicians are diagnosing their patients, b) what kinds of patients they are seeing and (c) how they are treating them.

[caption id="attachment_11309" align="alignright" width="117" caption="Jorgen tweeted the Invest in ME Conference"]
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Jorgen reported Dr. Peterson said this type of study was 'long overdue' and he's right. At Ottawa Dr. Unger told me it was always the CDC's plan to use random surveys to look at 'CFS patients' in the general population and then to compare them to the kind of patients seen in specialist practices AND to compare patients from one practice to another. The problem is that its taken over 10 years to get to the second part. In discussion Dr. Peterson has said he believes different patients are going to show up in different practices and this will illuminate the different types of ME/CFS that are present.
Dr. Marshall-Gradisnuk


Finally Jorgen reported that after almost 40 years of work in this disorder, Dr Peterson is optimistic about the future stating that he believes he 'finally sees light at the end of a long tunnel".

Dr. Marshall-Gradisnuk of PHANU must be riding high after landing a big grant and publishing some hot studies recently. She reported PHANU is ' building a nice repertoire of immunological markers that may help in early diagnosis of ME/CFS'.

Dr. Peterson and Simmaron are collaborating heavily with PHANU and Dr. Marshall-Gradisnuk will talk about biomarkers, Dr. Peterson, Rituximab and others in an interview with Phoenix Rising coming up shortly.

Thanks to Jorgen for the overview of the conference. See Jorgens twitter profile and follow him here.

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Comments

Thanks Cort, looking forward to hearing their latest findings from the Iime conference. Great to see them getting together and "brainstorming" - the way forward now.
 
My comment has come twice here Cort though only posted once and listed as one. Could be a "bug" in the system ? (over and above my own !) The error on Home Page only.
 
Thanks for putting this together, Cort - after reading about this conference I feel the most optimistic about progress than I have done in years. I think we're going to have an exciting year.

Do you know what we can expect in the next few months? I know Lipkin's XMRV study results are supposed to be announced at the end of this month. What other dates can we look forward to?
 
Thanks for the summary, Cort! It was a really interesting conference this year, and it seems to be quite a few things in the pipeline - both study results and upcoming research initiatives.
Best regards,
Jorgen Jelstad
 
Thanks Jorgen for giving me the opportunity to do the summary with all those interesting tweets :)
 
Thanks for putting this together, Cort - after reading about this conference I feel the most optimistic about progress than I have done in years. I think we're going to have an exciting year.

Do you know what we can expect in the next few months? I know Lipkin's XMRV study results are supposed to be announced at the end of this month. What other dates can we look forward to?
Hmmm....Dates...the only toher thing I know that wrapped up recently is the UK Lightning Process adolescent study. We're waiting on a couple of studies from the first round of the CAA's studies - the Logosomix and the gut microflora study....and as I remember quite a few studies at the NIH, several on POTS and orthostatic intolerance, are wrapping up this year..

Oh yes, Huber's HERV-K18 endogenous retrovirus and superantigen study is due this year.

Kogelnik will be bring out more stuff with the Open Medicine Institute as well.
 
yep. the comments are getting doubled - that's for sure..
 
Except the last one wasn't...maybe the gremilin is gone! :)
 
Cort you said something about a 'big splash' coming out in the next two months. I think this was february or march. Is it delayed, because I haven't seen a big splash yet:(
 
Cort wrote:

"It may be that CFS was doomed to limbo status until the technology able to reveal it was developed."

I think this is going to be the defense of a medical establishment that refused to accept the challenge posed by M.E. decades ago. But it won't do.

It does a disservice to all the doctors, researchers, and lay people who understood the gravity of the illness and did their best with very little means to address the ongoing catastrophe.

As Vincent Racaniello has said, his colleagues turned their back on complexity, a cardinal sin against intellectual integrity.

There was nothing preordained about this. We weren't "doomed" to experience this illness in this way. Choices were made by people who, at the very least, should have known better. It didn't require extraordinary powers of discernment, just an open mind, like Melvin Ramsey, for example, who in 1956 didn't need next generation sequencing or nano this and that to recognize, name, and describe what he saw.

As Harvey Alter said recently, you need to decide this is a disease worth studying. Argumentum ad technology as an explanation of why m.e. was not taken seriously doesn't cut it. If we had received the funding we deserved and the institutional support we deserved, legitimacy and research would have followed.
 
Cort, whatever happened to the (second) Baraniuk study on proteins in spinal fluid?
 
Thanks Jorgen for the tweets - and to Cort for putting it together on here.

Interesting that there was no discussion on GcMAF or MAF probiotic yoghurt - treatments that seem to be buzzing on the forums right now!

Anyway - ive pre-ordered my DVD from the conference and look forward to watching all the presentations when it arrives. I really hope to be there next year!
all the best, Justy.
 
It's funny it wasn't mentioned; its definitely done or near done - he must have had 5 or 6 posters on it at the IACFS/ME Conference.....maybe he didn't talk about it or maybe Jorgen was out of the room or maybe....I don't know...Its coming though.....:)
 
Hi akrasia, agreed it is not true that CFS was doomed to limbo status until the technology able to reveal it was developed." Serious failed tests results have been found in ME patients since the mid 1980s, including failed MRIs, SPECT, PET, EEG scans, Tilt table tests, anomalies in the immune system have been shown for decades like low NK cells, RNase L etc, and viral infections like Enteroviruses, EBV HHV6 have consistently been found. This scientific evidence has been systematically and deliberately ignored by the powers that be in certain countries all this time. There is thousands of scientific studies that show the physical and serious nature of this condition. Instead of acting on this information in both the US and UK, CFS criteria have been written that effectively ban the use of any of the tests that show these anomalies in ME patients, and have instead implied that it is some sort of Psychiatric condition.

The CDC itself was aware that patients in the lake Tahoe epidemic had failed MRI scans that showed AIDS like lesions, and were aware that this outbreak was similar to other epidemics of ME in the states and other parts of the world going back to 1934, and they ignored the epidemic nature of this disease which strongly implies that it must be caused by an infection, it is proven that the CDC was aware of this before inventing CFS, by an article written by Dr Stephen E Straus, who was also one of the principle writers of the first CFS (Holmes) definition, called The Chronic Mononucleosis Syndrome, published in the same month as the first CDC CFS definition, in which he mentions these facts see http://www.jstor.org/discover/10.2307/30136640?uid=3738776&uid=2&uid=4&sid=21100833009701

Although it is looking very possible that modern technology may finally find the cause and a cure for ME, previous finding should have lead to ME being accepted as a very real physical disease, and lead to large amounts of money and resources being put into further investigating these findings, these findings should have been used to diagnose patients in a similar way to the how MS is diagnosed, nobody knows the cause but tests can be done to confirm the diagnosis, ME should never have been portrayed as a psychiatric illness, because psychiatric illness don’t cause lesion in the brain!

It is very plausible that in the future we will see the likes of class action cases taken against the powers that have ignored this disease and the science behind it for so long, and have portrayed the victims of this illness as if they are nuts and malingers, I think it would be a great shame if statements made by the founder of one of the biggest forums on the web end up being used by the defense! Please be careful how you word things Cort.

All the best
 
Quote: "Mella reported that 40% of patients have relatives with autoimmune disorders – a startlingly high number - and a further indication of a strong genetic component to this disorder"

These autoimmune disorders running in the family might also be evidence of viral influence, since families living in close proximity in the same household for years, sharing the kitchen, bathroom, etc, would also tend to share the same viruses.
 
Agreed, Hip. It could indicate genetics or it could indicate a wimpy, hard to catch virus or retrovirus.

On another subject, yesterday this was tweeted.

Jørgen Jelstad ‏@DeBortgjemte
Columbia uni & @CII722 says Lipkin XMRV-study not due for release on June 30th. Info given in lecture in London was wrong.
 
Yes it could be a viral thing - but also points more towards the autoimmune case. Autoimmunity is known to run in families - causing not necessarily the same disease, but another autoimmune illness. In my family my mother has had severe thyroid issues for years, and asthma - i have M.E and my daughter has an as yet undiagnosed illness that looks like a cross between M.E and Crohns disease.
 
Yes it could be a viral thing - but also points more towards the autoimmune case. Autoimmunity is known to run in families - causing not necessarily the same disease, but another autoimmune illness. In my family my mother has had severe thyroid issues for years, and asthma - i have M.E and my daughter has an as yet undiagnosed illness that looks like a cross between M.E and Crohns disease.
Also women tend to suffer more from auto immune diseases than men, I believe its something todo with women having stronger immune systems.