BREAKTHROUGH: New Spinal Fluid Analysis Distinguishes Lyme from CFS

[Mark]

However, a caveat: many such proteins have also been found to be elevated in patients with psychological conditions.

Always nice to see you Dr Yes.

I think we should be cautious when we start worrying about such connections with 'psychological' conditions. Perhaps when we do so and regard them as clearly distinct from our own illness - which we emphasise is physical, not psychological - we are applying the same 'insult' to those people that we resent so much ourselves. I do have this suspicion that as this all unravels and we find the mechanisms behind ME/CFS, there may well turn out to be biological revelations and connections made that relate to some 'mental' illnesses as well.

Of course we are accustomed to wanting to draw a sharp line between ME/CFS - a physical illness - and 'psychological' illnesses...but it's worth bearing in mind that in the field of 'mental illness' we really know almost nothing about what causes 'bipolar disorder', 'schizophrenia', etc etc. We don't even have them well enough categorised to clearly distinguish one from another and know what distinct types of 'mental illness' there really are. Viruses are now being found in relation to those conditions as well...so it could turn out that what we see as the unfair labelling of ME/CFS as a 'psychiatric' or 'psychological' condition is equally the case for these other 'mental illnesses': they too may have viral, retroviral, or similar pathophysiology; they too are ultimately physical illnesses and not 'psychological'.

So we could tie ourselves in knots if we start worrying that the results apply also to, say, bipolar disorder, or even depressive illness, and start saying that may mean the cohort wasn't properly characterised, or worrying that a particular study might be used to suggest that we have a 'mental' illness after all and getting all flustered about that. We know that ME is a neurological condition: it affects the brain and nervous system; the cognitive impairments we all experience are part of that. Why wouldn't the type of disease processes involved be similar to disease processes involved in 'mental illnesses' that are also likely to have a physical cause located in the brain?

Wouldn't it be great if the big breakthroughs for us turned out to be just part of a wider breakthrough in the understanding of 'mental illness' in general? The important thing is to continue to emphasise the physical basis of what's observed. I do suspect that's what's going on here: the beginnings of a better understanding of neurological disease in general...and those psychological approaches to these illnesses could be consigned to the dustbin right across the board, one day. So if we find the same sort of proteins in relation to a variety of 'mental illnesses' as well, then I would be excited for all the people locked away in asylums, rather than worried that this is going to mean people say we have a 'psychological' condition after all.

(They probably will continue to say that...but that will become increasingly irrelevant, is my guess).

Of course, none of that is to say that we shouldn't also be demanding well-characterised cohorts, whatever is being studied...mixing everything up together isn't a good approach to studying something, as we know all too well...

 

[SilverbladeTE]

mark
as I psoted in another thread...
syphilis, lyme disease, toxoplasmosis and also other pathogens, cause mental illness
in the end, we may find out that a majority of mental illnesses are not caused by psychological issues at all, but purely organic ones, and thus treatable
much as Epigenetics has trounced much of the conceits of Eugenics.

 

[eric_s]

Sorry, Mark, but i disagree (with parts). I also think we should not worry about similar findings in psychological illnesses, the couple of abstracts i read about such studies didn't seem very convincing anyway, not as if there was such a clear distinction from other conditions and healthy people there, as seems to be the case with us. Correct me, if i'm wrong. The CSF studies look like important findings to me and i believe this has to be further investigated and quickly and more massively than it has happened unitl now. And we will see where it leads. That slow speed is not acceptable in an illness affecting so many people. Is there a way to donate to these groups, btw?

No matter wheter they will find a physical cause for illnesses that are now labeled as psychological, i think we should definitely make clear that what we have is physical. I think this is a very important point and we have so far not been able to convince everybody and must keep this effort up and intensify it. If others can "prove" the same for their illness, that's fine, but i think that's their job. We have to make sure we are seen in the correct light and not just accept the current situation because some day in the future others might be seen differently as well.

 

[anciendaze]

We have criticized the PACE study for including people with diagnosed mental problems (40%). We tend to forget that 60% did not have any psychological problem trained psychiatrists could find-- except ME/CFS redefined as psychological. If this turns out to have an organic cause, people ought to question whether or not any problem can be falsified within psychiatry (as opposed to falsified by discoveries external to psychiatry.) At one time MS was treated as psychological. (The diagnostic signs are named 'Charcot's triad'. You might check on a biography of Charcot.) It was moved from the category of mental illness to organic disease when the characteristic sclera were found at autopsy. This took generations.

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.

I doubt I have to tell anyone these are very sensitive issues.

We need to concentrate on people with definite organic illness and with minimal psychological problems to help pin down organic causation. Once serious research gets going on the organic problem events will take their own course.

 

[Esther12]

I'm not sure how amazing these results will be either. Hopefully they will lead on to something really useful, but at this point it's hard to know what they'll mean or how they'll be used.

 

[its ME Jeff]

Has anyone asked the CDC how soon they are going to do a replication study? Since they don't believe in XMRV, then they should have plenty of time to devote to this study.

 

[Dr. Yes]

Always nice to see you Dr Yes.

I think we should be cautious when we start worrying about such connections with 'psychological' conditions. Perhaps when we do so and regard them as clearly distinct from our own illness - which we emphasise is physical, not psychological - we are applying the same 'insult' to those people that we resent so much ourselves. I do have this suspicion that as this all unravels and we find the mechanisms behind ME/CFS, there may well turn out to be biological revelations and connections made that relate to some 'mental' illnesses as well.

Of course we are accustomed to wanting to draw a sharp line between ME/CFS - a physical illness - and 'psychological' illnesses...but it's worth bearing in mind that in the field of 'mental illness' we really know almost nothing about what causes 'bipolar disorder', 'schizophrenia', etc etc. We don't even have them well enough categorised to clearly distinguish one from another and know what distinct types of 'mental illness' there really are. Viruses are now being found in relation to those conditions as well...so it could turn out that what we see as the unfair labelling of ME/CFS as a 'psychiatric' or 'psychological' condition is equally the case for these other 'mental illnesses': they too may have viral, retroviral, or similar pathophysiology; they too are ultimately physical illnesses and not 'psychological'.

So we could tie ourselves in knots if we start worrying that the results apply also to, say, bipolar disorder, or even depressive illness, and start saying that may mean the cohort wasn't properly characterised, or worrying that a particular study might be used to suggest that we have a 'mental' illness after all and getting all flustered about that. We know that ME is a neurological condition: it affects the brain and nervous system; the cognitive impairments we all experience are part of that. Why wouldn't the type of disease processes involved be similar to disease processes involved in 'mental illnesses' that are also likely to have a physical cause located in the brain?

The reason for caution is the need to establish scientifically valid conclusions. In order 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.

 

[urbantravels]

If this turns out to have an organic cause, people ought to question whether or not any problem can be falsified within psychiatry (as opposed to falsified by discoveries external to psychiatry.)

This is a very key point, anciendaze. I remember asking a similar question, not quite as articulately, to one Alan Dove when he showed up on these boards for two seconds never to return again. I did not get an answer.

Could you falsify a psychiatric diagnosis by failure of the individual to respond to appropriate psychiatric treatment? I very much doubt it. There are always people who fail to respond to treatment. Even pharmacological interventions are very uncertain - they don't know why some depressed people respond to certain antidepressants and not to others, or don't respond to any of them, or respond to one and then have it stop working at some future date.

It seems that nobody is left who diagnoses disorders *strictly* based on symptoms except the psychiatrists. Therefore *any* disease where physical abnormalities do not present themselves in some way that is obviously detectable by current technology and current practice is vulnerable to being thrown into the psychological wastebasket.

There is, by the way, some talk and some research about finding biomarkers for, say, depression, that might help indicate which antidepressants will work and which will not for a given patient, instead of relying on the guesswork and trial and error that is currently used. I have to wonder, though, how aggressively that research will move forward - considering what an enormous market antidepressants already have and what vast numbers of people already take them. It seems the pharma companies do pretty well with the guesswork/trial and error method, and it's not too complicated for general practitioners to apply. It's only the patient that suffers from this method: like those hapless patients on "House, MD" where they near-kill the patient with multiple treatments and diagnostics in order to finally solve the mystery.

 

[Enid]

What a mess everything seems to get into once the psychiatrists become involved. They manage to cloud issues, detract from and ignore real medical research findings and generally behave like spoilt children - "that's my toy". But this is no game. From mass hysterias, personality problems to all in your mind - what next. With all the pathologies and now so close to cause why are they anywhere near ME. Sorry all - glad to get off my chest.

 

[CBS]

On being sane in insane places

I agree with Dr. Yes. This is going to take a while to sort out and any possible overlapping protein expression with MDD, etc. needs to be identified and excluded.

Now for my two cents on psychiatric diagnosis.

On Being Sane in Insane places pretty much sums it up (The Rosenhan experiment):

The Rosenhan experiment was a famous experiment into the validity of psychiatric diagnosis conducted by psychologist David Rosenhan in 1973. It was published in the journal Science under the title "On being sane in insane places."[1] The study is considered an important and influential criticism of psychiatric diagnosis.[2]
Rosenhan's study was done in two parts. The first part involved the use of healthy associates or "pseudopatients" who briefly simulated auditory hallucinations in an attempt to gain admission to 12 different psychiatric hospitals in five different states in various locations in the United States. All were admitted and diagnosed with psychiatric disorders. After admission, the pseudopatients acted normally and told staff that they felt fine and had not experienced any more hallucinations. Hospital staff failed to detect a single pseudopatient, and instead believed that all of the pseudopatients exhibited symptoms of ongoing mental illness. Several were confined for months. All were forced to admit to having a mental illness and agree to take antipsychotic drugs as a condition of their release.


The second part involved asking staff at a psychiatric hospital to detect non-existent "fake" patients. No fake patients were sent, yet the staff falsely identified large numbers of ordinary patients as impostors.


The study concluded, "It is clear that we cannot distinguish the sane from the insane in psychiatric hospitals" and also illustrated the dangers of dehumanization and labeling in psychiatric institutions. It suggested that the use of community mental health facilities which concentrated on specific problems and behaviors rather than psychiatric labels might be a solution and recommended education to make psychiatric workers more aware of the social psychology of their facilities.

 

[ahimsa]

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

Riley, it looks like they used the 1994 CDC case definition (Fukuda, et al). Here's an extract from the PLoS One web site (see http://www.plosone.org/article/info:doi/10.1371/journal.pone.0017287 ):

CFS Subjects

Both pooled and individuals CSF samples were analyzed. Equal aliquots from individual CSF samples were pooled to provide sufficient volume for extensive fractionation and two-dimensional LC coupled to tandem MS (2D-LC-MS/MS) analysis with immunoaffinity depletion from 30 women and 13 men (n = 43) who fulfilled the 1994 case definition for CFS [1]. All subjects were 1854 years old (median = 43) and underwent a careful history and physical examination by an expert experienced in evaluating patients with medically unexplained fatigue and pain. Patients had blood tests to rule out common causes of severe fatigue such as anemia, liver disease, hypothyroidism, systemic lupus erythematosus, and Lyme disease [14]. All subjects then underwent a psychiatric diagnostic interview designed to identify major psychiatric diagnoses for exclusion in this study. Eleven of the patients were not taking medicines. Subjects then underwent lumbar puncture.

 

[SOC]

What a mess everything seems to get into once the psychiatrists become involved. They manage to cloud issues, detract from and ignore real medical research findings and generally behave like spoilt children - "that's my toy". But this is no game. From mass hysterias, personality problems to all in your mind - what next. With all the pathologies and now so close to cause why are they anywhere near ME. Sorry all - glad to get off my chest.

Another old saying from my grandmother:
"When a man has a hammer, everything is a nail."

My addition:
When the man's ego is dependent on the fact that he has the only effective hammer, try your best not to look like a nail."

 

[oceanblue]

When the man's ego is dependent on the fact that he has the only effective hammer, try your best not to look like a nail."

Love it!

 

[oceanblue]

One group consisted of 43 patients who fulfilled the clinical criteria for Chronic Fatigue Syndrome (CFS). The second group consisted of 25 patients who had been diagnosed with, and treated for, Lyme disease but did not completely recover. The third group consisted of 11 healthy control subjects.

I don't wish to spoil the party, but 11 is a tiny, tiny sample for controls, and 43 is not a large sample for CFS. These results will need confirming with much larger samples, and I really hope that is what will happen in the near future.

 

[CBS]

I don't wish to spoil the party, but 11 is a tiny, tiny sample for controls, and 43 is not a large sample for CFS. These results will need confirming with much larger samples, and I really hope that is what will happen in the near future.

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.




http://www.ncbi.nlm.nih.gov/pubmed?term=Schutzer%20SE%20[author]

 

[anciendaze]

The flip side of psychobabble

I'm going to make a comment about psychiatrists which may not be received as well as others. I think it needs to be said anyway.

In addition to being locked up 'to protect us from ourselves', ME/CFS patients have increased vulnerability to violence. I know because I've tried to prevent it. What I learned was that most psychiatrists don't do real well at predicting violence prior to a criminal record.

A patient who is bright, energetic and glib can bamboozle a surprising fraction of psychiatrists. Talking to yourself, damaging property, suspecting people of poisoning your breakfast cereal, and scaring people with sadistic fantasies can all be explained away by a skillful verbal manipulator, and some are incredible. Actors are less impressive because they don't truly believe they are in danger of being destroyed by mysterious rays emitted by people with opposing beliefs.

This doesn't even necessarily benefit the patient in question. I'm thinking of one repeatedly reported as getting closer and closer to the edge over a period of years. Despite the best efforts of many people this one was only diagnosed as potentially violent when in jail facing multiple felony charges. You don't want to end up in an institution for the criminally insane.

Sending such a person home to live with a person suffering from ME/CFS is almost like being an accessory to murder.

There is an urgent need for improvement in both directions: recognizing sane people with organic illness; recognizing people who, for whatever reason, are sources of violence.

I hope everyone who reads this will agree we need to clearly separate our actions from those who advocate violent acts. ME/CFS patients I have known are very unlikely to become violent; it is simply too much effort.

 

[Hope123]

I think what hasn't been discussed here is the definition of the Lyme subjects. When I first saw the paper, I thought it would discuss how to pick out the subset of folks who do not fit CDC criteria but believe they have chronic Lyme from other CFS subjects. I don't keep up with the chronic Lyme lit much since it's not what I have but my understanding was that the controversy laid partly in the concerns about the current Lyme tests and how to interpret them.

However, the section on how subjects were picked out says:

All were documented to have had prior Lyme disease which
met CDC surveillance case definition criteria

Patients, enrolled in an NIH funded study, met the
following criteria [17]: (1) current positive IgG Western blot
using CDC surveillance criteria assessed using a single
reference laboratory (University Hospital of Stony Brook);

So my interpretation is these are people who would have been diagnosed with Lyme anyway with the standard tests (unless their doc didn't test for it at all at the beginning of illness).

An interesting follow-up to answer the question I had thought this would answer would be to test the folks who think they have chronic Lyme/ have controverial test results and see where their results lie.

This does have a lot of importance for folks with a CDC diagnosis already of Lyme, have undergone treatment, and are still having problems but not sure if this is the same population as the folks I've seen in ME/CFS forums or groups.

 

[Hope123]

Dr. Yes and others have mentioned how there have been many findings in ME/CFS and yet things have not been tied together or communicated well to researchers. As I had mentioned in one of my other posts, I plan on cutting my advocacy dollars to the CAA but I do not want to cut the research dollars I put into it because of the CAA's Biobank and patient registry measures.

Dr. Leonard Jason and others have argued for years that a finding here in patient A and a finding there in patient B, and so on, might not yield good information but if you were able to have patient A, B, and C get the tests that A got, the tests B got, and the tests C got, you might then be able to start separating out subtypes of ME/CFS if they existed. For example, patients with OI/ sleep/ and NK cell dysfunction might be one group while patients with prominent cognitive issues/ high cytokines/ rashes might be another group. [Note I am making these groups up and this is not based on any science.]This would help not only with diagnosis but with planning out future treatments. The CAA has been working on linking researchers together to do this and to establish a computer database of this information. Dr. Jason as I understand is an advisor on the patient biobank. If we fund just individual researchers, this type of collaboration might not occur and it might slow down the pace of research.

 

[urbantravels]

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.

 

[Bob]

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.

I read in one of Cort's recent articles that you can donate money to the CAA and designate it to be used for research projects only...
Here's the article... it says you can specify that your money only goes to research projects...

...

We continue to raise funds to support both research and public policy activities. Donors may restrict their donations to a particular program...

http://forums.aboutmecfs.org/conten...th-Jennifer-Spotila-cfs-me-cfs-phoenix-rising