Planned Lipkin study looking for biomarkers and pathogens in CFS

[heapsreal]

Certainly it could miss it, but I don't think it's likely to dismiss it. Lipkin strikes me as too smart to say, 'we didn't find anything therefore there isn't a problem'.

Actually, in the video he suggests one possibility is that CFS is caused by an uncommon reaction to a common virus; he seems open to a lot of possibilities. And techniques like deep sequencing are much better for proving there is a pathogen link (positive result) than proving there is none (a negative result is far from conclusive). I'll stop waffling now.

An uncommon reaction to a common infection is a very sound theory(as well as a retrovirus) as the most common immune abnormality is nk dysfunction which would give us these unusual reactions to common infections and i think would then put us in a category of immunodefiency disorder. This could be a primary immune disorder or secondary to a retrovirus i guess. The Japenese have called cfs a nk disorder for along time now. From my own research , it seems very hard to increase nk activity consistently and as has been said before its going to take a combo of improve the immune system.nk function and treating the current infections going on. I think once these viral/infectious loads are down, they can be kept down through maintaining the immune system in some way. Its all interesting stuff going on, just not happening quickly enough.

cheers!!!

 

[oceanblue]

I think I heard mention of BLAST by Lipkin. It was used in at least one CFS study: http://www.biomedcentral.com/1471-2180/11/2

Unfortunately, I'm not convinced this was necessarily a "cohort" e.g. in terms of their severity: http://www.biomedcentral.com/1471-2180/11/2/comments#462684 and they didn't find any differences on gene expression:


It reminds me of CDC studies: I think with the Fukuda definition one can pick up mildly affected people who may not be the best people to study, esp. if one is looking for pathogens.

Blimey, how did I miss that Sullivan study? Well, let's hope Lipkin is using CCC, or at least Fukuda with a decent threshold for physical function.

 

[Snow Leopard]

Yes and comparison, results for those meeting Fukuda/CCC
http://www.biomedcentral.com/1471-2458/11/402

Mean PCS: 26.8

In the following study, where 'most' met the Fukuda Criterira
http://www.ncbi.nlm.nih.gov/pubmed/10457734
The mean PCS was 32.1 after using the calculator in the comment that Dolphin linked to.

Many of those subjects in the twin study would probably have been excluded from the PACE trial for not meeting entry criteria (SF-36 PF score <65).

More interesting in those twin studies is the proportion of pairs that were concordant for CFS/CFS-like illness.

 

[acer2000]

I was encouraged by his talk. I thought a few things stood out as very interesting.

In light of his example about botulism being in the GI tract and skin-yet causing paralyzation (a neurologic symptom), it seems like he should expand his study to include tissues (like GI tissues, or other tissues identified by the monkey XMRV study).

Also, he made a comment about how CFS activism would be way more effective if it was coming from a unified voice and was less splintered. This really got my attention because of the recent split between Peterson and the WPI (and other examples of researchers working against each other instead of together), various patient organizations that are always fighting, etc... I think that this is really important and it pisses me off to no end that in the face of a potentially groundbreaking discovery (gammaretrovirus in CFS) the CFS world is even more at each other's throats than before.

The Whittemores want to figure out CFS and have funded it, apparently according to Lipkin there is another wealthy person in NY who has the same goal, Peterson claims he wants to do the same - what is so hard about getting all these people together under one roof to solve this thing?! Boggles the mind.

Also, what he says about the perversion of funding and interest towards acute illness vs. chronic illness, this is yet another example of how dysfunctional our country and government is. During the debate about healthcare costs last year, it was stated repeatedly that chronic illness accounts for something like 80% of costs. If 80% of our costs come from a small percentage of the population that are chronically ill, and we are projected to be deep in debt because of this, maybe we should talk about doing some serious research to discover the etiology of and to cure those chronic diseases?

This is going to sound harsh, but surely it would be cheaper in the long run to spend money on actually solving MS, Parkinsons, CFS, Diabetes, etc.. vs. spending money on keeping people from dying of acute illness. Dead people don't cost the healthcare system anything, people sick for the rest of their lives do. The problem is - healthy people who have never experienced serious suffering from chronic illness are all afraid of sudden death more than they are afraid of life with suffering. Of course in reality both need to be studied, but the perversion of funding toward acute illness is a recipe for long term healthcare budget disaster.

 

[eric_s]

Also, he made a comment about how CFS activism would be way more effective if it was coming from a unified voice and was less splintered. This really got my attention because of the recent split between Peterson and the WPI (and other examples of researchers working against each other instead of together), various patient organizations that are always fighting, etc... I think that this is really important and it pisses me off to no end that in the face of a potentially groundbreaking discovery (gammaretrovirus in CFS) the CFS world is even more at each other's throats than before.

I agree. This is just stupid... I don't know how people think we're going anywhere like this.

 

[Mark]

Also, he made a comment about how CFS activism would be way more effective if it was coming from a unified voice and was less splintered. This really got my attention because of the recent split between Peterson and the WPI (and other examples of researchers working against each other instead of together), various patient organizations that are always fighting, etc... I think that this is really important and it pisses me off to no end that in the face of a potentially groundbreaking discovery (gammaretrovirus in CFS) the CFS world is even more at each other's throats than before.

The objective of a "unified voice" for activism is a nice idea, but of course the crucial questions are: What, exactly, is this unified voice going to say, and what is expected of those who disagree with its words? There are some passionately held but irreconcilable differences of opinion within our community, and nobody should imagine that those differences are going to be resolved, or that people are just going to abandon their views.

In my assessment, there has been some good progress made regarding collaboration in recent times, both amongst researchers and amongst patient organisations - many, many people want to see greater unity of purpose, and Phoenix Rising demonstrates that a community with diverse perspectives can work together effectively on single issues where there is broad consensus.

I think the key is for us to consider a 'federated' model for patient organisations, in which different organisations are content to maintain different perspectives, to discuss those differences with each other in a respectful fashion, but most importantly, to put aside doctrinal differences and petty personal grudges temporarily when coming together strongly behind single issue campaigns.

We should always be looking for "lowest common denominators" - or, better, "highest common factors": points of principle such as the desperate need - and the overwhelming moral case - for greatly increased levels of research funding from the statutory bodies responsible for researching ME/CFS. Perhaps we can avoid getting bogged down in details if everyone works hard to think through the issues on which everyone is agreed.

Some starters - principles which command very widespread support and could be the subject of co-ordinated 'single issue' campaigns:
- Case for much more research funding
- Use of the CCC for research cohorts
- Campaign for proper recognition of the science of ME/CFS as a debilitating physical illness, by old-fashioned medical practitioners, state bodies, and medical insurers
- Greater publicity for the many strong research results re: physical abnormalities (eg NK cell function)

Any other fundamentals on which all ME/CFS patient organisations would agree?...

 

[eric_s]

I think the principles you've mentioned are good.

Here in Europe, at least in some countries, a first step would be to show we exist, that there is a serious problem many people have and that they can't be helped satisfactorily and often are unable to work. I think the average person here is not even aware of this simple fact. Just show people there is something right in the midst of society that they were not aware of that is not right and needs to be tackled. I think most would be shocked if they realized that even in their small town there are 20 or 30 people that have this and that in Europe it's one million people or more.

I also think we might not even need much of a unified voice that actually talks. If we were just able to show a strong presence, so decisionmakers are a) aware of the situation and b) realize we are strong and won't go away, i hope they would understand they need to help, that there's no way around it.

Maybe it would be more important to have a good agreement on what we don't want than to have a detailed program everybody agrees on.

I also think it's important what you said with regards to being able to talk to each other and put aside personal issues. This should always be possible and i think it's prerequisite for success.

Edit: For example, i often hear people say "unfortunately you're not many enough, so that it would be profitable for pharma companies" when i tell them about XMRV or similar things. When i then tell them we're talking about one million people in Europe, their jaw drops down. I've even heard people with ME/CFS say this themselves (that it would not be profitable)...
So i think this might be an important point. People, even within the community, are not aware of the size of the problem (or the power we have, if you look at it from another angle). Changing this perception might help a lot. Say "one million" as often as possible, until it sinks in...

 

[eric_s]

Also the costs this causes to a nation's economy should be something everybody can agree on (if the numbers come from a good study). And even if i don't like to look at things from that angle, it's something that should catch people's ear. If they understand it hurts everybody.

 

[Sing]

I just listened to the video. My understanding of his saying we would do best to speak in a unified voice refers to us as a patient group, rather than scientists, doctors and researchers per se. He spoke of social media and advised against using social media (like this or other forums, I presume) to start dividing ourselves up into groups, subsets or types, but instead implied that we use social media or any other means to unite us a large patient group with one strong voice demanding attention, funding, research and effective treatment.

The bias towards spending money on what kills people rather than what makes their lives miserable has been going on a long long time in the medical world. A good study which could show the relationship of ME/CFS to mortality, to a shortened lifespan, for instance, which I strongly expect is the case, would strengthen our hand in demanding help via research into our illness. (It may be "illnesses", but for the sake of unity, we ought to be speaking of illness singular.)

 

[Snow Leopard]

Some starters - principles which command very widespread support and could be the subject of co-ordinated 'single issue' campaigns:
- Case for much more research funding
- Use of the CCC for research cohorts
- Campaign for proper recognition of the science of ME/CFS as a debilitating physical illness, by old-fashioned medical practitioners, state bodies, and medical insurers
- Greater publicity for the many strong research results re: physical abnormalities (eg NK cell function)

Any other fundamentals on which all ME/CFS patient organisations would agree?...

Agreed.
Specifically with regards to research funding, the fact that CFS has the lowest ratio between societal economic costs, levels of disability and research funding (though this is hard to prove in countries other than the USA where there is more data).

What the single voice should not do however, is 'pick winners'. Eg the XMRV hypothesis, or CBT/GET. We should be equally critical of all research.

 

[Esther12]

re us being unified - hard to do with a dustbin diagnosis.

I can't think of anything we all agree on, and given the uncertainty that surrounds CFS, I don't really think that's our fault.

I had thought something like "CFS patients deserve to be spoken to honestly and clearly"... but even that's not true. Some patients really want to be able to engage with positive thinking dishonesty like in the Lightning Process. Some want to be able to engage with really out-there treatments that provide some hope or sense of understanding even if the ideas they're based upon don't hold up to any critical analysis.

A general 'more money for research' - but if this is then spent upon more questionnaire filling surveys, given to researchers who spin and manipulate their data, or just looking a common psychosocial strains amongst anyone who feels tired, that's far from ideal.

An independent review of how CFS has been treated, and why so many patients feel mistreated by the medical system? Without significant public concern behind us, it would probably end up being headed by some old boy keen to calm down angry patients (at least in the UK).

re Mark's suggestions:

I kind of agree. I think more emphasis should be placed upon sub-dividing patients (more so than the CCC does imo).

I'm not sure we'll get much movement on having CFS taken more seriously as a disability at a time when (at least in the UK) disabilities generally are being viewed in an increasingly dismissive manner.

re publicity for research - maybe this is where an emphasis on honesty and clarity could be made. The way the Pace results were presented was such a joke, and surely all patients could agree about that once the details had been explained to them.

 

[eric_s]

That was a bit negative Esther... Are you sure CFS is a dustbin diagnosis? When you apply one of the very loose criteria it probably is, but "we" don't want them anyway, i think eveybody agrees that the CCC or at least Fukuda should be used. Of course, at this moment i don't know either what exactly ME/CFS is, in terms of the mechanism behind it, but i'm not at all sure it's a dustbin thing. I would not be surprised if the majority of us all basically have the same problem. And what about ME, for example, as diagnosed by one of the ME criteria. Do you think this is a dustbin diagnosis as well?

Sure, our situation is not the easiest one, but we also have many things that are in our favour, like for example our large number. Don't take this personally Esther, but i think even the easiest problem (and our is of course not the easiest) won't be solved if people think they can't do it, even before giving it a try. We have so much we can do that we have never tried seriously enough and there's so much research going on right in this moment. Also there are many interesting leads we can follow, even apart form XMRV, i'm talking about EEG spectral coherence, the spinal fluid findings, the immunological patterns, the effects of antiviral treatment, etc.

 

[eric_s]

Agreed.
Specifically with regards to research funding, the fact that CFS has the lowest ratio between societal economic costs, levels of disability and research funding (though this is hard to prove in countries other than the USA where there is more data).

What the single voice should not do however, is 'pick winners'. Eg the XMRV hypothesis, or CBT/GET. We should be equally critical of all research.

But don't you think there are some things where we would need to say "NO" in a unified and clear enough voice. So maybe we should not pick winners, but at least have some clear no-gos.

 

[Sing]

I like your thinking, Eric.

 

[Snow Leopard]

but at least have some clear no-gos.

Pseudoscientfic ideas such as "The Lightning Process" are clear no-goes.

 

[Esther12]

That was a bit negative Esther

You're probably right. I've got some benefits stuff to go through, and that's not a cheering prospect given the way CFS is viewed. Hopefully the rest of you can make some better progress while I'm working on those dastardly forms.