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

June 2, 2012

Posted by Cort Johnson

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.

Jorgen tweeted the Invest in ME Conference

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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40 comments

{ 40 comments… read them below or add one }

Enid June 3, 2012 at 1:42 am

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.

Enid June 3, 2012 at 3:50 am

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.

Sasha June 3, 2012 at 5:30 am

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?

Jorgen J June 3, 2012 at 2:34 pm

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

Cort June 3, 2012 at 5:03 pm

Thanks Jorgen for giving me the opportunity to do the summary with all those interesting tweets :)

Cort June 3, 2012 at 5:11 pm


Sasha

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.

Cort June 3, 2012 at 5:12 pm

yep. the comments are getting doubled – that's for sure..

Cort June 3, 2012 at 5:27 pm

Except the last one wasn't…maybe the gremilin is gone! :)

FancyMyBlood June 3, 2012 at 5:38 pm

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:(

akrasia June 4, 2012 at 7:44 am

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.

Anne June 4, 2012 at 12:24 pm

Cort, whatever happened to the (second) Baraniuk study on proteins in spinal fluid?

justy June 4, 2012 at 2:13 pm

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.

Cort June 4, 2012 at 3:12 pm

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…..:)

rlc June 4, 2012 at 3:23 pm

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

Hip June 5, 2012 at 2:55 am

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.

jace June 5, 2012 at 4:18 am

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.

justy June 5, 2012 at 5:37 am

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.

user9876 June 5, 2012 at 6:59 am


justy

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.

shannah June 5, 2012 at 11:35 am

Chris Cairns review on the conference for those interested.

http://cfspatientadvocate.blogspot….ce-june-1-2012.html?showComment=1338907787537

natasa778 June 5, 2012 at 1:26 pm


justy

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.

Autoimmune pathology may well be triggered by a virus, so the two are NOT mutually exclusive

SOC June 5, 2012 at 1:51 pm


natasa778

Autoimmune pathology may well be triggered by a virus, so the two are NOT mutually exclusive

My daughter and I both began our ME/CFS journeys with the same very sudden onset viral illness within a week of each other. It's hard for me to imagine that there isn't a viral component for us, at least. Plenty of other PWME had similar onsets. An autoimmune pathology triggered by a virus (or other immune insult) makes a lot of sense.

justy June 5, 2012 at 1:54 pm


natasa778

Autoimmune pathology may well be triggered by a virus, so the two are NOT mutually exclusive

Hi Natasa – yes of course that is a current theory and may well be the case – my brain isnt thinking too well at the moment!
All the best, Justy.

Mark June 5, 2012 at 5:30 pm


Anne

Cort, whatever happened to the (second) Baraniuk study on proteins in spinal fluid?

If I have this right, that would be the one where the subtypes of ME/CFS he previously identified with some kind of symptom cluster analysis (I missed the detail of how those subtypes were identified) were surprisingly confirmed by 4 quite distinct patterns of spinal fluid proteins (there was a quite extraordinary-looking slide on that, it looked really strong). My impression was that there are some quite exciting publications in the pipeline on this subject.

I took some fairly detailed notes on the conference so I'm hoping to find time to write something up in the next week or two.

jace June 6, 2012 at 6:43 am

Nice one, Mark. I look forward to that.

Re the viral insult activatiing a pathogen, my ME started with the 'flu, and thiis year my daughter's started with both her small boys having chickenpox.

Enid June 6, 2012 at 10:17 am

Just can't help thinking what clobbers the immune system in the first place since an ordinary sore throat which normally passes lead to my own deterioration in health (and appearance of many latent viruses) in the first place. Polio to Chicken Pox appeared. (Let alone my Neurologist seeking MS and Parkinsons).

SOC June 6, 2012 at 10:33 am


Mark

I took some fairly detailed notes on the conference so I'm hoping to find time to write something up in the next week or two.

Thanks for taking the time to write up something from the conference. I'll be looking forward to it.

Cort June 6, 2012 at 12:13 pm


akrasia

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.

I know where you're coming from Akrasia – and I do agree that the medical establishment has turned its back on us. (I think I've done as much or more than anybody to point out that fact – perhaps you missed the "Still the Yuppie Flu After 20 years article http://phoenixrising.me/archives/10548 ?)

Technology is improving rapidly though. I just talked to Vinnie Lombardi at the WPI who said that just in the space of two years the ability to detect pathogens has increased significantly.Dr. Peterson said nobody can really be clear about their pathogen status until they are tested using arrays like Lipkin has. Determining whether herpesvirus reactivation is present has been thwarted to some degree by poor diagnostic tests. The data mining capabilities that are allowing Broderick to demonstrate aberrant functioning in immune networks was just developed in the last five years or so.

So while I agree that the NIH has backed away from this illness because of its complexity (and because of the horrible funding structure for us there) I also think that technologiy is getting better and better at revealing what is going on with ME/CFS and that development may be crucial.

MishMash June 6, 2012 at 5:15 pm

Drumroll, please,…and the future of ME/CFS research will be based on….work done in other chronic diseases. AIDS, MS, lupus, parkinsons, traumatic brain injury, lymphoma, and others. Taken together, their funding is huge. Ours is puny. Folks, grab on to some coattails and hold on, it's going to be a fun ride.

ukxmrv June 6, 2012 at 8:13 pm

Can anyone think of a new technology? i.e. what are the new things that have given concrete results that we could not have had 10 years ago?

akrasia June 7, 2012 at 9:25 am

Cort,
My point was that we weren't doomed to experience the incomprehension and neglect that followed in the wake of mainstream medicine embracing the psychologizers. Did you see Margaret Williams' compendium of immune dysfunction in the Invest in M.E. newsletter? Did you read the post from Co-Cure describing the genesis of the Rituximab breakthrough, a breakthrough by the way lauded by Fluge and Mella's hospital chief as being the most exciting thing he had witnessed in his career?
All of this is basic science, observation which leads to hypothesis which leads to experiment. Nothing fancy here.
We can debate the "ethical" nature of the choices, how conscious or unconscious they were, how determined by institutional dysfunction and inertia, the seductions of vanity and career, and the all too human impulse to cover one's ass. Or we can speculate about darker motives. One thing seems very clear to me: from the point of view of consequences, what has occurred is evil. It has led to death, enormous ongoing suffering, and social disintegration.
My path through this has been to try to practice, not without considerable frustration and difficulty, an acceptance of the disease, while simultaneously cultivating as much clarity as I can about the social and political contexts in which it has occurred. Without this interrogation the acceptance dimension, for me, feels hollow.
I don't expect Andreas Kogelnik to be our standard bearer; his job is to build bridges to the broad mainstream biomedical science actors, most of whom have been absent from the M.E. debate.
It's our job to frame this properly for each other and the greater world. We are doing the work that journalism and the academy should have done if they had not been embedded in the trance.
Let's not add amnesia to our burden of cognitive deficits.

Cort June 7, 2012 at 2:53 pm


Eric Johnson from I&I

Hi Eric, I'm surprised at you saying this coming as you do (like me) from a Chlamydia pneumoniae background. NAC can and does damage a significant number of chlamydial elemetary bodies, as witnessed by the intense reactions people get to it. In my case an increase in dosage feels like someone has poured gasoline down my oesophagus. There is also the distinct endotoxin reaction one gets – a sudden drop in body temperature that is quite unnatural. These brisk reactions are repeated with other disulphide-bond reducers such as DMPS.

I have high respect for Dr Stratton, but how likely is it that every single one of his beliefs is accurate? I do not have a strong opinion one way or the other on the NAC / EB thing. I notice that Dr Wheldon used a qualifier — he said, approximately, "EBs are likely destroyed by NAC."

Why do you speak of an esophageal reaction? Could this just be caused by NAC irritating you via reflux of the stomach fluids? I have reflux frequently some months/years.

Corroboration from other reducing agents is highly interesting, but how many people have noted strong reactions from those less-used agents? Even with NAC, has anyone used blinding to make sure the responses do not involve a "nocebo" effect?

Part of the deficiency in my certainty here is my own — I dont know how the extracellular redox regulation, if any, works. Maybe Rich could give us a clue. This seems like an important thing to know before you can interpret the reported effects of reducing agents on EBs in serum (or was it blood) ex vivo. That is, my question is whether the same thing would happen in vivo — or would redox regulation by the body prevent it. Even if so, it is one thing for this to be done by Dr Stratton and another for it to be replicated widely.

Its easy, I think, to imagine there being some other mechanism for these responses to NAC etc.

However, regarding Cpn in general, I may well be consistent with the XMRV coinfections model, and I hope Cpn investigations in CFS will get a boost (even if the XMRV model is not true).

I agree! I think this disorders will inform each other. Fatigue and cognitive problems are found in these disorders… There is a huge potential for them to learn from each other…:)

Cort June 7, 2012 at 2:55 pm


Dreambirdie

Donnica Moore asked me about the forum and how to access it.
I sent her the link(s).

Hopefully she will join us! :) :):)

Autoimmune disorders often have an infectious trigger; it could be the pathogen itself or it could be the pathogen somehow deranging the immune response (ie pathogen is resolved but the immune response against the body continues on.)

Cort June 7, 2012 at 4:23 pm


rlc

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

I understand your viewpoint RLC. I promise to be careful with what I write. I knew that sentence would be a bit controversial so I took some care in writing it. I hope you're as careful as reading what I wrote as I was in writing it. I didn't say CFS was doomed to limbo until new technologies were developed….I said it may be that the technologies present couldn't have uncovered what was going on… Dr. Kogelnik referenced how important the results from new technologies were drawing researchers into the field.

In the latest PHANU paper Dr Marshall Gradisnuk wrote that it was possible that the inconsistent immune results over the years may have been due to inadequate testing procedures…and then they showed that a significant immune dysfunction was present. .In another paper they reported miRNA results suggesting that some important parts of the immune response have turned off in CFS…..miRNA's weren't understand to be important regulators until about 10 years and research has boomed in the last five years. That study simply couldn't have been done… The epigenetics research is in a similar phase; only recently have researchers developed the tools to allow them to more easily do broad scans. The CAA's gut microflora study is another example of advances in data processing allowing researchers to characterize the entire gut microflora…that was a pipe dream not to long ago. Gene expression is another technology that has been working out the kinks and is getting its feet on the ground.

Yes, ME/CFS has horribly neglected but it has much to gain from the improving technologies. Their ability to look at the molecular basis of this disorder has created major opportunities and yes, the resolution of this disorder may very well come from them.

Cort June 7, 2012 at 4:37 pm


akrasia
Cort,
My point was that we weren't doomed to experience the incomprehension and neglect that followed in the wake of mainstream medicine embracing the psychologizers. Did you see Margaret Williams' compendium of immune dysfunction in the Invest in M.E. newsletter? Did you read the post from Co-Cure describing the genesis of the Rituximab breakthrough, a breakthrough by the way lauded by Fluge and Mella's hospital chief as being the most exciting thing he had witnessed in his career?
All of this is basic science, observation which leads to hypothesis which leads to experiment. Nothing fancy here.
We can debate the "ethical" nature of the choices, how conscious or unconscious they were, how determined by institutional dysfunction and inertia, the seductions of vanity and career, and the all too human impulse to cover one's ass. Or we can speculate about darker motives. One thing seems very clear to me: from the point of view of consequences, what has occurred is evil. It has led to death, enormous ongoing suffering, and social disintegration.
My path through this has been to try to practice, not without considerable frustration and difficulty, an acceptance of the disease, while simultaneously cultivating as much clarity as I can about the social and political contexts in which it has occurred. Without this interrogation the acceptance dimension, for me, feels hollow.
I don't expect Andreas Kogelnik to be our standard bearer; his job is to build bridges to the broad mainstream biomedical science actors, most of whom have been absent from the M.E. debate.
It's our job to frame this properly for each other and the greater world. We are doing the work that journalism and the academy should have done if they had not been embedded in the trance.
Let's not add amnesia to our burden of cognitive deficits.

"My point was that we weren’t doomed to experience the incomprehension and neglect that followed in the wake of mainstream medicine embracing the psychologizers."

I completely agree with you there :) …(although in retrospect since that's what happened I guess we were kind of 'doomed' to have to cope with that".

It'll be interesting to read Margaret's huge summary….Reviewers vary on the significance of the immune results…PHANU just did a study in which they explicitly referred to the inconsistent immune results (and then supplied some consistent ones using better testing procedures)…When I've looked at them I've found, except for a couple findings, a real mishmash…The reason I'm pointing this out is that – except for natural killer cells and a few other findings – there isn't this incontrovertible huge arrow pointing at the immune system that the research world is ignoring.

PHANU and Dr. Klimas have had some strong findings recently…Hopefully (yes :) , as technology develops – and PHANU apparently has some cutting edge technology – the findings will become clearer.

floydguy June 7, 2012 at 4:46 pm


Cort

The reason I'm pointing this out is that – except for natural killer cells and a few other findings – there isn't this incontrovertible huge arrow pointing at the immune system that the research world is ignoring.

So if not the immune system then where is that incontrovertible huge arrow pointing? From what I've seen the inconsistencies mean variations in how the immune system is dysfunctional – not that it's dysfunctional in some and not in others so much. And even if that's the case then those with immune system abnormalities should be separated out into another illness or subgroup as there would appear that there are enough people who have low NKC function and other immune issues.

Mark June 7, 2012 at 6:39 pm

I hope it doesn't cause too much confusion if I strongly agree with both Akrasia and Cort…:)…but I don't think they really disagree…

I really like Akrasia's post #31 above, I think it's quite right to point out that there is no excuse in the complexity of the pathology, and the need for cutting edge knowledge and techniques to understand it, for the decision to ignore the evidence and treat the disease as a psychological phenomenon. There were always plenty of physicians and researchers who knew otherwise, and said so publicly, and the decision to ignore ME/CFS as a real medical disease quite clearly seems to have been driven by unconscionable financial considerations, with huge and tragic human consequences. No amount of ignorance can excuse those political decisions.

At the same time, one of the take-home messages from the IiME conference was that the 'state of the art' of scientific investigation into ME/CFS pathology is indeed right at the cutting edge of our understanding of human biology, and it really does seem to me that in order to understand and treat ME/CFS it's going to involve an understanding of the interface between the neurological and the immunological. The word 'autoimmune' still seems to be somewhat misleading, as it carries certain assumptions with it which seem to me to be quite likely false. But more than one researcher speaking at IiME emphasised the extraordinary complexity of the fields which the scientific investigation of ME/CFS pathology is heading into. This investigation of the neuro-immune world may well be just about the final frontier of human biology – especially if we have to bring the emerging investigation of the complex world of the gut into the equation as well (and we probably do have to).

I was reminded, during the conference, of a book I picked up while studying for the Artificial Intelligence section of my MSc. This was a computer science book, looking at the immune system, and it emphasised that the complexity of the immune system was actually much greater than the complexity of the human brain. We used to assume that the brain was the final frontier in complexity in human biology, but it might help to understand the issues here if we realise that what we are dealing with, in ME/CFS and related 'autoimmune' disorders, appears to be an acquired dysfunction affecting the homeostasis at the level of the neurological and immune systems and the interfaces between them. The exciting and cutting-edge work by the Bond researchers is exploring the details of this dysfunction in ME/CFS patients. But if we can all appreciate how tough a problem it is to try to understand how the human brain works, then that should help to appreciate the complexity involved in understanding how the neurological world interfaces with the immune system which is even more complex…

So I think Akrasia is right to say that there is no excuse in all this for the psychologising of ME/CFS: that was a crime and I don't think it will ever be forgotten. It will turn out, in the end, that biomarkers always were available, for discrete subsets, using older technology, and that there's no reason that these couldn't have been discovered if the research had been allowed to proceed properly. But at the same time, if an understanding of ME/CFS, and effective treatment strategies, are going to require a understanding of neuro-immunology, then we are only just at the beginning of the age where such an understanding is realistically possible, which is precisely why ME/CFS research ought to be one of the most attractive and exciting fields of study for forward-looking researchers.

August59 June 11, 2012 at 4:29 pm

Did Dr. Baraniuk give a presentation on anything he has been working on?

Mark June 11, 2012 at 4:54 pm


August59

Did Dr. Baraniuk give a presentation on anything he has been working on?

Yes indeed, I think I referred to it in passing somewhere above, it's also described in the conference report on the IiME site; I'm still trying to find time to write up a report on the conference but with CFSAC this week it's going to be a while before I find time to do it, if I ever do…

Cort June 11, 2012 at 4:54 pm


_Kim_
alice1

Hello.
My name is Alice and I'm so happy to have found you.
I've had ME for 23 years(I became sick right after the vaccines I needed to work in Manila)and probably echo what everyone else here has said.I will add to my introduction and read the threads during the week as I'm too pooped to continue right now.
I live in Toronto and it's time to hit my pillow.
Can't wait to catch up and throw in my 2cents where I can.
Best to all
Alice

Hi Alice. Thanks for taking the time (pooped or not) to introduce yourself. We've got a fairly strong Canadian cohort here, so I think you'll find yourself in good and familiar company. Welcome.

Yes, he did. I wasn't there but I was told he talked about his new study. He also presented abstracts on it at the IACFS/ME conference in Ottawa. Hopefully it will be out soon.

anne_likes_red June 11, 2012 at 5:18 pm

To add to the reports so far :) Dr Ros Valling's report from the conference was posted on the ANZMES facebook page:
https://www.facebook.com/?ref=tn_tnmn#!/cfs.anzmes/posts/478386435511609

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