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BREAKTHROUGH: New Spinal Fluid Analysis Distinguishes Lyme from CFS

eric_s

Senior Member
Messages
1,925
Location
Switzerland/Spain (Valencia)
Our medical systems seem to be pretty rotten... thanks USA, at least they seem to be better, albeit not perfect either. And Switzerland is not a poor country... yet you could think you're in Congo (sorry Congo)... If you have something they know about, no problem, you get very good care, but with ME/CFS... good night...
 

Enid

Senior Member
Messages
3,309
Location
UK
Struck me at the time though barely able to comunicate,walk or eat - this is the 21st century with all these consultants and no diagnosis despite such incapacities. Placed me in a goodnight limbo too. And having suggested they consider ME the UK's utter ignorance follows. The Psychos with everything to make matters even worse - CBT & GET. So we are in an even worse position.
 

Dr. Yes

Shame on You
Messages
868
I didn't know this! And this was not investigated instantaneously, research projects funded, doctors educated?!?! What the hell is wrong with the people in those positions? I have not read the Baraniuk and Sorensen papers yet, but how could anyone still doubt ME/CFS is real and physical after those, if they found a statistically significant difference?

Edit: Those studies were published in 2003, 2005 and 2009 and i have not heard one doctor tell me about it!!! Seriously! Are they actually good for anything (the doctors)?

There have been tons of compelling biomedical findings in CFS research, but few are really followed up, generally due to a lack of funding. The Kerr studies that found 88 dysregulated genes in CFS patients are one notable example.

This new study found elevated levels of endogenous proteins (i.e. that our bodies normally produce) in spinal fluid; some are commonly associated with inflammation or other immune reactions, as well as neurological damage and I believe oxidative stress. However, a caveat: many such proteins have also been found to be elevated in patients with psychological conditions. More work has to be done to further characterize these abnormal proteomes and to use tighter cohort selection criteria (such as PEM as an inclusion criterion) and other control groups (subjects with certain psychiatric conditions, subjects in non-CFS states of oxidative stress, etc.). Second Caveat - this work has yet to be validated.

XMRV has reportedly been found in cerebrospinal fluid by the WPI (according to Judy Mikovits at the Santa Rosa talk). The model of XMRV-induced neuropathology that Sandra Ruscetti has put forward is based on an MLV model (forget which one), which involves a series of inflammatory events in response to viral infection of brain capillary endothelial cells; these inflammatory responses ultimately wind up causing neurological damage in the mice. I don't know if there have been proteomic analyses of the CSF in these mice. At any rate, it would be interesting to find out if there is a connection between these two findings in CFS patients.
 

eric_s

Senior Member
Messages
1,925
Location
Switzerland/Spain (Valencia)
Thanks, Dr. Yes. To me it doesn't matter too much if that sort of changes is also found in other types of illnesses. What matters to me is that they have found something that allows to distinguish us from others. And something they can follow up on. It will lead to whatever is true.

I've just found this article about the original Baraniuk study http://www.news-medical.net/news/2005/12/06/14869.aspx. This was 2005. Was this proven to not be true for all CFS cases, was it proven to only be there in a subset? If not, then how could anyone say there is no biomarker?

Can you tell me, Dr. Yes?

I'd heard about the Kerr studies, but not about Baraniuk. The name yes, but i didn't know what he had found.

Lack of funding... There are one million sick people, somebody finds a measurable abnormality in the CSF and they don't immediately follow up because of a lack of funding? Sure, that's a good argument... :headache: Do those people only work if somebody is pointing a gun at them :rolleyes:?

(I was not talking about Baraniuk here, he obviously did great work, but the ones who should immediately make funding available in the case of such a finding. How can you let 1 million sick citizens wait?)
 

anciendaze

Senior Member
Messages
1,841
Dj vu all over again

I just started to read this paper carefully, and was immediately struck with dj vu.

For those with typically short attention spans, and those too young to remember, there was a shift in medical politics apparent in research papers published during disputes over AIDS. During the period when denial was politically acceptable, many studies of physical abnormalities with suggestions of viral involvement were attacked as seriously flawed, particularly for the way they dealt with samples from sick people diagnosed with conditions which might not be AIDS. Researchers trying to avoid criticism couldn't produce strong results.

When finding a single viral cause became a political hot button, there were immediate studies by respectable researchers using pooled samples from up to a dozen separate AIDS cases. These seemed mysteriously exempt from criticism, except by 'lunatic fringe' critics. We now have a shift from concern over contamination, taken to extremes such as demands that positive and negative controls should be handled in separate buildings, to use of pooled samples to get levels of abnormal proteins up to a point where they can be detected.

Researcher affiliations include SUNY, Columbia, Albert Einstein schools of medicine and Uppsala University. Tandem mass spectrographic equipment is not cheap.

The major change is not what they are finding, (Dr. Baraniuk showed significant anomalies in CSF of ME/CFS patients,) it is who is finding things, and how much money they are spending.
 

Marco

Grrrrrrr!
Messages
2,386
Location
Near Cognac, France
I just started to read this paper carefully, and was immediately struck with dj vu.


When finding a single viral cause became a political hot button, there were immediate studies by respectable researchers using pooled samples from up to a dozen separate AIDS cases. These seemed mysteriously exempt from criticism, except by 'lunatic fringe' critics. We now have a shift from concern over contamination, taken to extremes such as demands that positive and negative controls should be handled in separate buildings, to use of pooled samples to get levels of abnormal proteins up to a point where they can be detected.

Researcher affiliations include SUNY, Columbia, Albert Einstein schools of medicine and Uppsala University. Tandem mass spectrographic equipment is not cheap.

The major change is not what they are finding, (Dr. Baraniuk showed significant anomalies in CSF of ME/CFS patients,) it is who is finding things, and how much money they are spending.

Now that's a positive thought. Thank you anciendaze! I hadn't got past thinking "Oh yeah, another potential biomarker".
 

Dr. Yes

Shame on You
Messages
868
Thanks, Dr. Yes. To me it doesn't matter too much if that sort of changes is also found in other types of illnesses. What matters to me is that they have found something that allows to distinguish us from others. And something they can follow up on. It will lead to whatever is true.

Yes, but when they follow it up they have to be sure to compare results with people with other conditions that might have similar CSF proteomes, and also use a stricter definition for their CFS patients; otherwise they can't be sure they are looking at a CFS-specific abnormality.

I've just found this article about the original Baraniuk study http://www.news-medical.net/news/2005/12/06/14869.aspx. This was 2005. Was this proven to not be true for all CFS cases, was it proven to only be there in a subset? If not, then how could anyone say there is no biomarker?
I don't think Baraniuk's 2005 study had been independently validated, and I'm not sure offhand how much work he himself has done beyond that.. he discusses some of his ongoing research in the following report he made to the CFSAC in 2008 (scroll down til you get to his presentation): http://www.hhs.gov/advcomcfs/meetings/minutes/cfsac20081028min.html

Until more work - including validation work - is done to further characterize the proteins he had identified and to establish if any of them may in fact be biomarkers, his findings remain at the preliminary, or 'discovery' phase. And yes, it's kind of painful to think that was over 5 years ago, though I believe he has another one in the works. The problem is always funding; the NIH gives peanuts to CFS research, and many scientists simply can't get grants for follow-up studies....in a particularly blatant case, the CFS SEP has rejected multiple grant proposals in XMRV research by the WPI, despite a landmark initial study.

Which reminds me.. has anyone ever obtained official confirmation that McClure has resigned from the CFS SEP? Not that she's the problem, obviously... at least not the previous one.
 

SOC

Senior Member
Messages
7,849
Edit: Those studies were published in 2003, 2005 and 2009 and i have not heard one doctor tell me about it!!! Seriously! Are they actually good for anything (the doctors)?

They are good for things that have been known about for ages. Our clinic doctors are far disconnected from research -- they're applying to us things that were discovered 10+ years ago. They haven't done research; they don't know how to interpret research. They're technicians.

In any other field they would be booted out for being 10 years behind the times. In medicine we're supposed to respect them. :rolleyes:
 

August59

Daughters High School Graduation
Messages
1,617
Location
Upstate SC, USA
Dr. Baranuk has completed a new study that I think was similar to his earlier study, but I believe he looked harder at areas that sort of came as as surprise to him in the first study. The study is complete (according to Cort???), but as usual he is STUCK trying to get it published. I still do not understand this "publishing" shit when the results could potentially affect seriously ill patients and their ability to have a higher quality of life.

Here is the link to the first Baranuk study from the PR website when it was published initially. I could not find it through the earlier link.
http://forums.aboutmecfs.org/content.php?92-Proteins-on-the-Brain-A-Breakthrough-for-ME-CFS
 

SOC

Senior Member
Messages
7,849
This must be the forthcoming Baraniuk study. Estimated study completion date April 2011, at the time of posting.

http://clinicaltrials.gov/ct2/show/NCT00810329

Proteomics of Cerebrospinal Fluid in Chronic Fatigue Syndrome

NB:
Estimated Primary Completion Date: April 2011 (Final data collection date for primary outcome measure)
This likely means that it will be 6-9 months to publication of this information -- 3-6 months to write and clear internal editing, then 3-6 months for journal publication process.

I don't want people getting anxious if they don't see this as published data in the spring. :Retro smile:

Research organizations and journals are all different, so there are no absolutes in these timelines, but we should remember that good research takes time to write and publish.

Thrown together, low quality, unreviewed papers do get published in trash journals. We've seen a fair bit of that in the past 18mo. The good stuff takes time. We need to make that our mantra if we want to stay sane and avoid the emotional rollercoaster through this process. ;)
 

ahimsa

ahimsa_pdx on twitter
Messages
1,921
I didn't see a link to the article (from the Associated Press) on the NY Times web site so I thought I'd add it here:

http://www.nytimes.com/aponline/2011/02/23/health/AP-US-MED-Chronic-Fatigue-Clue.html

I used the NY Times email feature to send this article to a few people I know. I was hoping to bump it up to the "most emailed" list. It will probably never get into the overall list but it might make it into the "most emailed" list for the health topic.

Edited: GAH! I just noticed that the headline for the article uses the dreaded "CF" phrase instead of CFS or ME/CFS. So even though the data in the article is good maybe this is not a good thing to display on the most popular list.....
 

eric_s

Senior Member
Messages
1,925
Location
Switzerland/Spain (Valencia)
They are good for things that have been known about for ages. Our clinic doctors are far disconnected from research -- they're applying to us things that were discovered 10+ years ago. They haven't done research; they don't know how to interpret research. They're technicians.

In any other field they would be booted out for being 10 years behind the times. In medicine we're supposed to respect them. :rolleyes:
Yes, but i am in contact from time to time with a doctor who has specialized in ME/CFS. He is a GP, but nevertheless he should know about that study. Unless it has been proven to be wrong. And i have not heard that this is the case.

Also i can't believe it's 6 years since the Baraniuk study and we don't have a clinical test for this available. If the NIH doesn't want to fund it, why didn't he turn to the CAA? Or did he and they didn't want to fund him? Why didn't he call for patients all over the world to donate, so he could investigate further? Through all the patient organisations in North America and Europe. This sounds so important that i'm quite sure many would have donated.

The system is not working... or only very poorly
 

August59

Daughters High School Graduation
Messages
1,617
Location
Upstate SC, USA
I knew I had asked cort about Dr. Baranuk awhile back because Cort was in the study. This was areply from cort on Dec. 9th, 2010


Originally Posted by August59
Hey Cort - Do you know when Dr. Baranuk is going to release or publish the "Spinal Fluid" study?
When I saw him at the CFSAC meeting it sounded to me like it would be real soon but I think 'soon' has a different meaning the research community :). He did say the results were good - which is great news particularly since he expanded the study into new areas I think

Hopefully we will see it soon??
 

Riley

Senior Member
Messages
178
Does anyone know the diagnostic criteria used for the CFS patients in this study or how they were chosen to be included?
 
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