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BREAKTHROUGH: New Spinal Fluid Analysis Distinguishes Lyme from CFS

Hope123

Senior Member
Messages
1,266
Yes, you can earmark funds at the CAA for only research. I have a friend who has been doing this for years as he doesn't like other aspects of the CAA.
 

Mark

Senior Member
Messages
5,238
Location
Sofa, UK
Eric, I'm not sure whether my earlier post was unclear, but I don't really see what you were disagreeing with since I agree with just about everything you say in response :) - certainly that we should make it very clear that what we have is a physical illness. I guess you may be right that it may turn out the abnormal CSF proteins are unique to us - lets hope so - and not actually a factor in other psychiatric conditions after all. The only part of your post that maybe I don't quite agree with is the bit that says: "If others can 'prove' the same for their illness, that's fine, but i think that's their job". It's an even tougher ask for people with severe mental illness to advocate for themselves than it is for us, so that feels a little harsh...but of course, our job here is to focus on our interests as ME/CFS patients, so fair enough, up to a point...

The reason for caution is the need to establish scientifically valid conclusions. In orderly to correctly identify a potential biomarker from CSF, one must be able to control for health conditions that can result in similar levels for a given protein or proteins. Everything from major depression to oxidative stress can result in abnormal CSF protein levels, including some of the proteins that were found to be abnormally elevated in this study. The task of identifying a protein abnormality unique to CFS involves making certain that a given abnormality is not being caused by misdiagnosed patients or by a co-existing condition. [That process, especially from a pool of candidates this large, will very likely take years.] Two things that need to be done about this are: the use of increasingly exclusive selection criteria (e.g. use the Canadian Consensus criteria or equivalent/ require PEM as an inclusion criterion, more aggressively screen out psychiatric conditions, etc), and compare the CSF of this more specific ME/CFS cohort with cohorts of subjects with depressive disorders, non-CFS chronic pain conditions, non-CFS oxidative stress, etc.

Just in case there's still any confusion about my previous post, I wholeheartedly agree with everything Dr Yes said here. My concern really was to try to pre-empt any confusion that may arise if it were to turn out that other 'mental illnesses' also involve abnormal CSF proteins...in essence to point out that we shouldn't then assume that the CFS cohort with the abnormal CSF proteins must therefore also have been comprised mainly of people with psychological and psychiatric conditions and not of people with ME.

My position is this: ME/CFS - properly defined - is a physical, medical condition with neurological symptoms (as well as many other symptoms). We're acutely aware that it's physical because of the rest of the characteristics of our illness, which are quite clearly physical and very likely viral. But those neurological symptoms include disease processes that attack the brain, causing cognitive impairments, brain-fog, etc. So that insight should lead us to realise that we stand at the current historical borderline between what is known and understood to be physical and medical, and what is still unknown and considered to be 'mental' illness...and that the way forward in all these cases is to pursue biomedical, physically based research, rather than exploring 'psychological' angles.

To put it another way: what we argue for in respect of ME/CFS - the need for biomedical research into the causes of the disease - is in my opinion also true for the 'psychological' or 'psychiatric' illnesses as well, where the main emphasis at the moment is on the management of difficult people. So we should be careful when we draw the line defining our illness as 'physical' that we don't forget that the same is ultimately true for these other illnesses too. Of course, the additional distinction in our case is that our clearly physical symptoms have also been identified as supposedly 'psychosomatic' symptoms - an obviously retrograde step.

One might look at it this way: if the history of medicine is the gradual realisation that things thought to be 'evil spirits' or 'mental illness' or 'psychological conditions' are properly understood as physically based illnesses, then the introduction of concepts like 'psychosomatic' as applied to obvious diseases is a setback along the way; a step back in time; a temporary reversal to the historic trend of forward progress in medicine.

Anyway...the only point, I suppose, that provoked my earlier post, was the mention of 'psychological' conditions with elevated CSF protein levels. As others have expanded upon, there's a long history of physical disease being treated as psychological or psychiatric or mental illness, and my strong suspicion is that all of these conditions will one day be properly understood as physical, biomedically based illnesses. And the breakthroughs in understanding each of those forms of 'mental illness' properly may come one by one...or they may come all together...

Since Dr Yes mentioned tighter research criteria, I think it might be worth mentioning that we have been having a discussion recently (before PACE arrived and sent us all into overdrive) to try to establish some clear common ground: issues that everyone can agree on, get behind and campaign together on specific issues. One thing we all agreed on was the central importance on insisting on the use of the CCC and the requirement for PEM as an inclusion criterion for research purposes. There were some qualifications to add to that, especially as applied to a clinicial definition, but essentially there seems to be a very broad-based agreement on that crucial issue so it seems to be a single issue that we can unite behind and form a strong campaign on.

Here's that discussion:
http://forums.aboutmecfs.org/showth...ia-can-we-resolve-our-community-s-differences
 

CBS

Senior Member
Messages
1,522
Arrggggh.

I'm wondering if directed donations to the CAA might be possible - earmarked ONLY for the research initiatives and with the specification that such dollars are not to be used under any circumstances for CEO salary. I know one can make directed donations to nonprofits; I've done it myself; but I have the impression that it's more or less on the honor system that the nonprofit actually directs your dollars where you specify.

UT,

Donations directed for research only are possible with the CAA. As for the classification of salaries and whether or not that is considered research if the person spends time administering some component of the research is a question that ought to be asked explicitly as there are no hard and fast rules across organizations as to what constitutes a research related use. You could always say that you want your donation to go to researcher only and under no circumstances would you approve of your donation being used to pay KM's salary. And then get a response (in writing) that they would honor your request.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Something that Jonathan Kerr did with his gene expression study was to test depression-only patients as well... Interestingly, he found that there was no overlap of gene expression abnormalities with the ME patients. He also used a computer analysis of his gene expression results to subgroup the ME/CFS patients... This might be a useful thing for the authors of this study to do, although Kerr's subgrouping didn't seem to give any answers, but they might have done if he was given further funding.
But, I agree, that for research, we need a far more exclusive diagnostic criteria that allows for a more homogeneous cohort of patients to be tested.
 

Dreambirdie

work in progress
Messages
5,569
Location
N. California
Great thread. Thanks to all who have contributed to the discussion here.

My question is what is Judy Mikovits's take on the spinal fluid study? Has she made any comments about it? Since she revealed XMRV was found in the CSF of CFS patients (at the Santa Rosa talk, as someone mentioned), how does that connect with proteins that were found in the spinal fluid study? Can/does XMRV create these kind of proteins? Or are they the result of the inflammatory response?

Anybody know?
 

oceanblue

Guest
Messages
1,383
Location
UK
Eleven is a small number but somewhere it was mentioned that they have tested hundreds of normal subjects to create a standard healthy profile and that these eleven healthy controls conformed to the expected healthy profile. Still, more needs to be done. I'll look for reference. This is not the first CSF study done by Schutzer.

Establishing the proteome of normal human cerebrospinal fluid.
Schutzer SE, Liu T, Natelson BH, Angel TE, Schepmoes AA, Purvine SO, Hixson KK, Lipton MS, Camp DG, Coyle PK, Smith RD, Bergquist J.
PLoS One. 2010 Jun 11;5(6):e10980.
Well, 200 in the 'normal' group - plus the finding that repeated samples over 4 weeks from the same 10 volunteers produced consistent results - does make this look very interesting indeed. Thanks very much for this.

Hopefully there will be many more studies done in this area.
 

urbantravels

disjecta membra
Messages
1,333
Location
Los Angeles, CA
My hat's off to those 10 volunteers - weekly LP's for four weeks. Wish I could send them all a thank-you card.

(In addition, of course, to all participants in this newly published study.)
 

anciendaze

Senior Member
Messages
1,841
...Since she revealed XMRV was found in the CSF of CFS patients (at the Santa Rosa talk, as someone mentioned), how does that connect with proteins that were found in the spinal fluid study? Can/does XMRV create these kind of proteins? Or are they the result of the inflammatory response?

Anybody know?
Some do seem to be the result of inflammatory response in both illnesses. As for detection of XMRV in CSF, others have reported that a preliminary paper on a CSF study with negative results has been pulled from publication. Things are happening offstage.

Stage directions from Shakespeare:

Allarums and excursions in the night.
 

Dreambirdie

work in progress
Messages
5,569
Location
N. California
Some do seem to be the result of inflammatory response in both illnesses. As for detection of XMRV in CSF, others have reported that a preliminary paper on a CSF study with negative results has been pulled from publication. Things are happening offstage.

Stage directions from Shakespeare:

Offstage is a popular place for CFS research, eh? "Cowards die many times before their deaths."
 

Dreambirdie

work in progress
Messages
5,569
Location
N. California
Paging Dr Yes

Speaking of players...

Could the good doctor, who likes to cross dress as a nun, :rolleyes: please empty his mail box? I have been attempting to send a PM with no results.

thank you.
 

klutzo

Senior Member
Messages
564
Location
Florida
To SickofCFS,
A recent study I saw somewhere I can't remember concluded that it now takes an average of 17 years for new research to sift down to the level of the practicing physician in the USA. This is one more reason to become an expert in our illnesses and to find a doctor who will actually read research we bring to him/her.

I saw another survey that solved the mystery for me of why doctors often stare at me as if I were a Martian when I talk about research. It may not mean they think we're nuts. It may just mean they have no idea what we are talking about and don't want to admit it. In this survey, only 3% of doctors even knew what an NK cell was!

To various people who posted about Psychiatry,
Before the illness, I was a psychiatric social worker. What has happened since then to the profession of Psychiatry is appalling. They've become nothing more than malpracticing shills for Big Pharma, legalized drug dealers who diagnose people with serious mental illness in 5 minute appts., by reading questions from checklists and not allowing the patient to speak at all except to answer their questions. Then they hand out a script for the latest expenisve and untested poison that will get them a trip to the Bahamas. It is disgusting. For anyone who needs therapy, and God knows this disease can make you depressed.....I certainly am....I would recommend only Psychologists or licensed therapists. No, they can't give you drugs, but will work with your primary doctor if drugs are really needed. Because they cannot give out drugs, they are not subject to this bribery, and may actually treat you like a human being.

And, most mental illnesses have already proven to be biologically based. The Wesselyites are apparently not reading the same research as other people in the field, or more likely, are ignoring it.

I personally know a woman who spent six months on a Psych ward because nobody had bothered to check her blood sugar. Once they did, she was found to have severe diabetes. Once under control, her "schizophrenia" disappeared. I had a friend in college who spent 2 months on the Psych ward diagnosed as paranoid with delusions, until her ANA came back positive and Lupus was correctly diagnosed and treated.

OCD was the first domino to fall, when abnormal brain chemistry was proven. ADD/ADHD are caused by prefrontal lobe brain damage, often initiated by an anemic mother who simply fails to take her iron supplement during pregnancy, but there are other causes too. A whopping 94% of rage occurs in people with brain damage of some kind......I personally have this problem due to Lyme. I have documented brain damage, and my brain functions at 45% of normal. After a lifetime of previously having no temper at all, I find I cannot control myself to the extent that I have become a hermit except for a few close pals whom I know I won't get mad at, and we had to put up a six foot high wood fence around our property to protect our truly horrible neighbors from me. I was afraid I might kill one of them. Schizophrenia involves DNA alterations. Anxiety and depression involve abnormal neurotransmitter levels. These are just a few examples. The brain is also connected to the body, which all these specialists who carve it up into ever smaller pieces forget.

As far as why the research is so slow in getting done. IMO, when you combine the UK mysteriously closing their CFS records for what I believe is about 83 years, with ignoring more and more physical evidence, then maybe I should change my Avatar to The Red Queen, because I think it's time for OFF WITH THEIR HEADS, since it's clear to me they've experimented on us on purpose. (Or maybe I'm just paranoid and ought to be locked up, lol).

klutzo
 

Dreambirdie

work in progress
Messages
5,569
Location
N. California
A recent study I saw somewhere I can't remember concluded that it now takes an average of 17 years for new research to sift down to the level of the practicing physician in the USA. This is one more reason to become an expert in our illnesses and to find a doctor who will actually read research we bring to him/her.


THE MAJORITY OF DOCTORS DO NOT READ RESEARCH (2 articles)

Thanks Klutzo, for your great post about this. RIGHT ON! :thumbsup::thumbsup:

http://www.hormoneandlongevitycenter.com/doctorsknowledge/
http://www.nejm.org/doi/full/10.1056/NEJMsa035507
 

shannah

Senior Member
Messages
1,429
This line jumped out at me in this particular article on the subject.


"Because some of the proteins found in the spinal fluid of chronic fatigue syndrome patients also are implicated in Alzheimer's and Parkinson's diseases, the results support the idea that chronic fatigue syndrome has an underlying neurological cause."

from:

PNNL scientist leads research into chronic fatigue syndrome treatment
http://www.tri-cityherald.com/2011/03/11/1403487/pnnl-scientist-leads-research.html#ixzz1GMJu6tWC
 

kurt

Senior Member
Messages
1,186
Location
USA
This line jumped out at me in this particular article on the subject.


"Because some of the proteins found in the spinal fluid of chronic fatigue syndrome patients also are implicated in Alzheimer's and Parkinson's diseases, the results support the idea that chronic fatigue syndrome has an underlying neurological cause."

from:

PNNL scientist leads research into chronic fatigue syndrome treatment
http://www.tri-cityherald.com/2011/03/11/1403487/pnnl-scientist-leads-research.html#ixzz1GMJu6tWC

Good catch, that connection suggests brain damage. But wait, we already know that from other studies! It is like the researchers keep going around in circles. Still, this is a great potential biomarker, I hope they can find the proteins in blood though, a lot easier test. And I wish they had this back when I had my spinal tap done, and the MD said there was nothing wrong...he declared CFS to be psychological. When I said why are other family members getting sick then? (my daughter has CFS) You guessed it, he described Munchhausen by Proxy to me. We could not leave that doctor fast enough, and yes I told him in so many words he was a quack. (this was an NIH research neurologist) I wonder if he will see this article?
 

redo

Senior Member
Messages
874
As SilverbladeTE remarked, syphilis causes serious mental illness. The fight over that disease also required generations. Vertical transmission of infection produced enormous infant mortality and numerous complications typically attributed to genetics.

I want to point out that both syphilis and Lyme disease are known to be caused by spirochetes. An underlying viral cause is now suspected for chronic Lyme disease. At the time syphilis became curable, it would have been impossible to detect a viral disease without unique signs. An undetected cofactor is a real possibility, and would help explain an historical mystery concerning the origins of epidemic syphilis.

Funny coincidence. I've been thinking about writing the exact same thing about syphillis. I really think it may be virus + the syphillis bacteria. And that the activation of the virus might be what shifts the disease from the first stages to the last stages...

Same with lyme. It might me that the co-factor - a virus - is what makes lyme go from the the first stages into the chronic stages.

This virus may be a endogenous virus (such as HERV W), and it may be a exegenous virus (such as viruses in the MLV class). That's my thoughts about it.
 

Dolphin

Senior Member
Messages
17,567
Link to BioTechniques article

Here's a little covering note I wrote for elsewhere:
I haven't read the full Schutzer et al. paper yet but I imagine this is
easier to understand. At the same time, it is probably a bit more technical
than an average newspaper article. Mass spectrometry is a separation
technique - it is based on the fact that objects can be separated based on
their mass (~weight) - light pieces will be flung further by a force.
However, different proteins may share the same mass which is why
mass spectrometry can need to be combined with other techniques to be more
specific about what is being found - this is what is what was done here.

Source: BioTechniques
Date: April 6, 2011
Author: Lisa Grauer
URL:
http://www.biotechniques.com/news/P...n-disease-diagnosis/biotechniques-313643.html

Proteome-wide association studies: the new hope in disease diagnosis
 
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