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Preliminary news from Lipkin & co

Research 1st

Severe ME, POTS & MCAS.
Messages
768
CFS Researchers claims of a 'cure' or 'treatment' for ME/CFS, CFS/ME or ME biomarker, must be performed for reasons of accuracy in patients with neurological disease signs if the word ME is to be included, as ME is a neurological disease, not a fatigue based syndrome caused by reason infinite.

Tests to confirm ME, should include brain blood flow imaging and cognitive testing, as well as other markers such as glial cell activation. As the knowledge progresses of 'neuro CFS', this should include new, cutting edge imaging tests. Otherwise the claim of a 'cure' for CFS/ME, (by any researcher) is laughable, because the only requirement to have at time of diagnosis for this 'CFS/ME' to enter into a research study, is NO EVIDENCE of anything wrong with the patient. Yes, you have that correct. SELF REPORTED SYMPTOMS. This is precisely how psychiatry managed to elbow their way into destroying the legitimacy of organic disease, diagnosed as 'CFS'. Study, the wrong people, accidentally on purpose (F48.0 CFS).

This is fundamental to remember when reading online blogs or websites in the future that will 'spin' stories to get more clicks, to plant false hope into patients, because the authors believe they have 'CFS' or have a vested interested in not allowing ME to be separated from CFS politically.

If we are keen on accuracy, we thus need to detect and deflect hype and stick to science of the original disease, (if we have ME that is). If we have Chronic Fatigue Syndrome and a fatigue based condition that we do feel fits us like a glove, then the reverse is correct and you can discount my next points:

Confusing titles of research papers and their past, present and future claims:

Researchers tend to use the words, CFS, ME and CFS/ME, ME/CFS as if they were days of the week, without any real intentional bad thinking behind their choices, probably just convention and habit. Conversely, it can be calculated to purposefully muddy the waters when 'no evidence' papers are required to bolster ME denial, or pathogen denial.
We have seen this for decades with psych theories (nothing wrong with that in the correct cohort) in which Chronic Fatigue Cohorts become CFS become CFS/ME become ME.

Usually entirely unintentionally (but hampered by the default problem of well defined ME cohorts to select from)
ME/CFS or CFS/ME researchers are mixing cohorts of patients with different conditions. It is thus a nonsense medically and academically to be able to ever cure ME/CFS or CFS/ME, as it would also be to cure
Parkinson's disease/CFS or Multiple Sclerosis/CFS. or attend a Tennis match for Under 10's/Seniors and hand out a medal to the winner.

Why? The CDC and their creation of the CFS which are appalling out dated unfit for purpose research based criteria, which then became clinical criteria. The error, forces the physician to use exclusion based tests, not complex inclusion based tests, to guess the individual has the CFS in the first place. That is not scientific and open to mass misdiagnosis (as research has shown)...ironically.

The CDC Fukuda Criteria, tragically, prevents patients with explained symptoms of post infectious disability, to have a diagnosis of CFS or ME (in most circles not all), or more recently, the British manufactured CFS/ME and the American ME/CFS.

Does this mean Dr Lipkin is wrong? No, it means he is studying Chronic Fatigue and four or more symptoms (Fukuda CFS), this is all 'CFS' needs to be and thus it doesn't have to include inflammation, infections, or neurological damage - all of which are found in subgroups of people with 'CFS' who actually then find out they have ME and Lyme. The same applies for Canadian CFS and SEID.

You can add as many symptoms as you like (O.I, Cognitive Dysfunction), but these are just claims of the patient and not verified unless diagnostic tests are used. They aren't. I can thus be misdiagnosed with a condition that isn't ME and enter into a CCC CFS research study, easily. All I need to do is report symptoms. It's that simple.

Ergo, researchers who claim to have a biomarker for 'CFS' or 'CFS/ME' using weak criteria that exclude patients with signs of disease cannot have one, when using the ME acronym in their research paper title.

It is a known fact subgroups of CFS who may have ME, have:

Immune defects, such as NK.
Treg dysfunction.
IgG subclass abnormalities
Active Cytokine inflammation
Active infection
High levels of oxidative stress
Development of multiple secondary conditions (over time, that may take years or decades to develop).

Yet because of how CFS is 'screened' (using no tests) THESE PATIENTS ARE EXCLUDED FROM RESEARCH STUDIES, especially the severely affected and bed ridden. Think what that might mean, in your 'negative papers' for pathogens studies, be it HHV-6, or Borrelia co-infections. Heterogeneous cohort issue dilutes the relevance of any finding in anyone diagnosed with CFS for any reason, positive or negative attribution. This is why you sit up and take note, when you learn that 85% of Montoya's patients were positive for a politically censored retrovirus, we the public, aren't allowed to know what it is (HERV, Exogenous etc). So guess what, different subgroups of CFS.

Undeniable fact: 'CFS' research is and always will be a dead duck, when using weak, vague, fatigue based criteria.

So if anyone is terribly excited about Dr Lipkin's claims or anyone else's, you need to check out the awful truth of how CFS is diagnosed and how ME/CFS is diagnosed and what ME/CFS or CFS/ME means, in relation to the CNS inflammatory disease, ME, which is potentially fatal and immunosupressive. (There are people on this forum and online elsewhere who find out they carry multiple infections, and never knew, because the tests didn't exist decades ago, and or they aren't given them by non ME experts. (99.9% of all doctors).

Inside CFS and ME there are different conditions, with different outcomes, because PWME are (by default) excluded from 'CFS' research studies, especially the severely affected who, over time, can develop:

Epilepsy and Seizures disorders - explained reason for fatigue - removed from CFS research cohorts.
Asthma - explained reason for fatigue - removed from CFS research cohorts.
Autonomic Dysfunction - explained reason for fatigue - removed from CFS research cohorts.
Hypotension - explained reason for fatigue - removed from CFS research cohorts.
Chronic migraine sufferer - explained reason for fatigue - removed from CFS research cohorts.
Diabetes - explained reason for fatigue - removed from CFS research cohorts.
Neuropathic pain syndromes - associated to nerve damage - removed from CFS research cohorts.
Arthritis and Athraliga/PMR - explained reason for fatigue - removed from CFS research cohorts.
Active sleep disorder - explained reason for fatigue - removed from CFS research cohorts.
Autoimmune disorders developed since onset of CFS - removed from CFS research cohorts.
Active allergy - explained reason for fatigue - removed from CFS research cohorts.

The above is classic ME, yet the above is not allowed to become ME/CFS, or CFS/ME or 'ME' due to the rules of diagnosis. 'ME' is thus hidden forever. ME dies out, along with the patients. No one is to blame, job done.

How CFS is diagnosed, thus wrecks the relevance of biomedical research findings, and claims of research regarding 'ME'.

If you are disabled with ME and desperate for a cure, please remember this when reading hyperbole about 'cures' or 'fixing CFS'. No one can 'fix' CFS, because the criteria is so vague, even the IOM decided it was useless and needed to be replaced. CFS, unless altered, never needs to be related to 'ME' at all - diagnostically. Thus a 'breakthrough' may be utterly irrelevant to you.

Yet incorrectly titled research papers continue to be published, using 'CFS' research cohorts, which is incredibly confusing for everyone to determine just what it means, medically and scientifically, especially in relation to ME a disease which makes at least 1 in 4 sufferers housebound or bedbound and thus unable to be part of research studies.

If they aren't part of research studies, then they aren't being researched, which means findings (not including them) likely means they aren't 'them' and you aren't me, and 'we' aren't us.

Put this all together and there is no solid facts in biomedical research to discover what disease lies behind subgroups of disease based 'CFS' only guess work.

Who benefits from this financially and who benefits from this personally in terms of managing an epidemic politically? Not the invisible patients and their careers left at home to rot, with a chronic disease that is different to the one being studied by researcher 'X', that never will be 'reversed' or 'prevented' when you find out not just you, but now your parents are infected too and your siblings or the love of your life or even worse, your own children who just happen to have Autism or ADHD, or some other 'defect' that was never in your family before you got sick back in the 1970's.

ME isn't a 'fatigue' disorder. It's an acquired brain injury. Cognitive IQ scores lower than average intelligence in previous gifted people? People 'forgetting' everything like the elderly at only 20 years old. Growth factors associated to angiogenesis highly elevated, oxidative stress and brain atrophy? This is all accelerated ageing, courtesy of chronic low grade neuro inflammation.

The legacy of what the CDC did back in 1988 with the creation of 'CFS' when the pathogens spread into us during the visible HIV and invisible Lyme epidemic and the alleged bad mothers with Autistic Children is clearly upon us.
 
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Forbin

Senior Member
Messages
966
From Cort's blog:

I tell you though one of the embargoed gut findings is simply fascinating. It’ s a very different look at ME/CFS and I think it ties in really well in a way that nobody else is really looking it. If the finding holds up be ready for a big surprise.

So, it's in the gut...?
What has been studied before but has not had significant attention? Dysbiosis has had a lot of attention.
Enteroviruses? This quote from Hornig suggests not:

He didn’t state anything about more pathogens. I heard Mady Hornig state that when she was in Incline.

So, lactic acidosis, fungi?

Yeah, this certainly makes me wonder if this is about candida overgrowth or some other yeast/fungi thing. The idea of treating yeast overgrowth in the gut gained some attention in the early 1980's (even before the CDC came up with the "CFS" moniker), but I think official medicine regarded candida overgrowth as a "fad" theory. As I recall, candida overgrowth was not specifically tied to "Epstein Bar Virus Syndrome," as it was then known, but rather to a range of complaints that included EBVS. However, the symptoms of yeast overgrowth were very similar to those of EBVS as I recall.

The originator of this concept seems to have been William Crook, M.D., and his book, "The Yeast Connection" (1986) was the public's main source of information on it. *

[ *ETA - It turns out that Orian Truss, MD may have been the first to put forth this concept. His book was called "The Missing Diagnosis," published in 1983. ]

I once brought up "The Yeast Connection" with an infectious disease specialist, and he said something like "Oh, yes, and what was the name of that author?" He had a funny smile on his face and I knew he wanted me to say "Crook," but I would not give him the satisfaction. Apparently, a researcher's last name is an indication of the quality of his observations. :bang-head:
 
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JAH

Senior Member
Messages
497
Location
Northern California
. This is why you sit up and take note, when you learn that 85% of Montoya's patients were positive for a politically censored retrovirus, we the public, aren't allowed to know what it is (HERV, Exogenous etc). So guess what, different subgroups of CFS.
I've been in 2 of Montoya's studies, so am curious where you got this info.
 

Scarecrow

Revolting Peasant
Messages
1,904
Location
Scotland
I've been in 2 of Montoya's studies, so am curious where you got this info.
It came from a CFS PCOCA on 10 September 2013:
http://www.cdc.gov/cfs/meetings/cfspcoca-09-2013.html

There's a recording of the call here - it's very quiet but the quality is good.
http://www.mediafire.com/listen/yfnc43nl34n7tzm/dr ian lipkin 10 sept 13.mp3

Ian Lipkin said:
"We found retroviruses in 85% of the sample pools. Again, it is very difficult to know whether or not this is clinically significant or not. And given the previous experience with retroviruses in chronic fatigue, I am going to be very clear in telling you, although I am reporting them in Professor Montoya's samples, neither he, nor we, have concluded that there is a relationship to disease."
Sorry but I've no idea where in the call Lipkin said that. I found the quotation on this blog:
http://www.greenmedinfo.com/blog/plague-update-xmrv

Edit: The quotation is just after the 9 minute mark. Lipkin concluded by saying "if I were to place bets and speculate I would say that that they are not going to pan out".
 
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JAH

Senior Member
Messages
497
Location
Northern California
U
Are you retrovirus positive or unknown pooled positive? On meds?
unknown. They've never told me the results of either study. One of them was the study that disproved xmrv - I think Lipkin still has my blood from that study. I'll ask Montoya next time I see him. I'm on anti virals.
 

JAH

Senior Member
Messages
497
Location
Northern California
It came from a CFS PCOCA on 10 September 2013:
http://www.cdc.gov/cfs/meetings/cfspcoca-09-2013.html

There's a recording of the call here - it's very quiet but the quality is good.
http://www.mediafire.com/listen/yfnc43nl34n7tzm/dr ian lipkin 10 sept 13.mp3


Sorry but I've no idea where in the call Lipkin said that. I found the quotation on this blog:
http://www.greenmedinfo.com/blog/plague-update-xmrv

Edit: The quotation is just after the 9 minute mark. Lipkin concluded by saying "if I were to place bets and speculate I would say that that they are not going to pan out".
Thank you for the link - was able to listen to most of it. I wonder what % of the control group tested positive for retrovirus. I strongly disagree that not following up on the retrovirus angle so far, is any kind of "political censorship." Either Lipkin, Montoya et.al. think it's a dead end, or they're still working on it. Peterson has devoted his career to this illness, Montoya stuck his neck out at Stanford to get a CFS clinic, and finally we get a researcher like Lipkin on our side, I'm not going to question their integrity, and presume some kind of cover up about a secret retrovirus.
 

acer2000

Senior Member
Messages
818
FWIW the Lipkin Cohort is about as well qualified as having ME/CFS as one can be given the current state of definitions. For example, lots of patients in his studies are well characterized patients from Dr Peterson's practice.

I still think Dr Davis idea of doing a "severely ill" cohort study is a good idea though. Those patients are the sickest and likely have the biggest abnormalities (whatever they are) and haven't been studied because they can't make it to clinics.

Perhaps both groups can share data.
 

Research 1st

Severe ME, POTS & MCAS.
Messages
768
I would interpret his words to mean something that hasn't really been looked at before.

That would rule out leaky gut and enterovirus infection related things, or d-lactate and other stuff by Maes and Meirleir. But perhaps Cort simply isn't aware of what Maes and Meirleir think about the gut. It would be a nice surprise if some of their ideas were confirmed by an independent team.

Hi, thinking out loud here in my reply...

I'd add in my thoughts that Dr Lipkin has no authority to rule out anything jn ME or CFS. (No doctor in the world does until patients are seen in clinic individually).

If a patient thinks they might have Leaky Gut or Enterovirus infection, or D-Lactate, go test for it privately and see. Please don't rely on CFS 'research' studies, because the person in the study is not confirmed to have anything wrong with them at all and may have a different disorder.

No CFS criteria needs to have anything proven medically wrong with the patient. So what matters more, is if you personally have an abnormality detected, not someone who doesn't have it.

Please note I am not suggesting you personally think or have said this as a belief system (or anyone on this forum), but I've see certain 'fanboys' of Dr Lipkin on blogs who report the research news on 'CFS' as if it's a tabloid newspaper, lots of hype which is somewhat stomach churning as it plants false hope into people diagnosed with ME or CFS, but have no idea if they actually do. Much more caution is needed, in my view, in patients who literally have never had any tests done on them. Now for the 'experienced' patient, who's blown $50,000 on private testing and has a whole dossier of test results, and they know it all correlates with ME CFS research that's different, but I'm guessing this is rather rare.

If we look at Dr Lipkin's CFS negative papers (pathogens) 'researching' X number of people with self reported symptoms (based on chronic fatigue), it's inevitable, logically, a negative paper will happen, even consistently.
To find anything in ME CFS, the patients needs to be properly diagnosed by an expert (such as Dr Peterson/De Meirleir/Kogelnik - researchers who do find consistent infections in patients I should add). Otherwise, if you just add people in your study from a blood draw collection with 'CFS' on a tick box form, when doing research, you're getting random blood samples out of people with Chronic Fatigue and you'll find nothing, or the odd unexpected result that is then discounted, as in the majority, nothing is found.

I'd say in terms of 'truth', of who has what in ME CFS, only individuals having tests on their own bodies for pathogens and other markers who repeatedly test negative, can then rule things out with their own physician. I'd never, ever rely on anything from ME CFS research to make me believe one way or the other. Conversely, the government love it, they can make blanket decisions from negative studies (or positive);

So don't rule yourself out of research findings positive or negative, if the inclusion and exclusion criteria of being allowed in the study to give in blood samples to be tested are so bizarre (Fukuda CFS is very bizarre) as there's still no more proof that you, or I, are 'them' in CFS research. If any researcher ever tells you dismissively ''they can't find anything in the blood'' of CFS patients' of a sizeable number researched,they aren't getting samples from people with chronic, severe, organic ME CFS.

In terms of determining any 'stunning research breakthrough'', the internet will tell us is going to make us well again, we have a statistical problem that can't be denied.

Some PWME don't have ME, they just think they do because, there is no agreed test yet (there are lots of tests, just not a definitive agreed upon test). And many PWCFS, who identify as having a horrible chronic organic CFS don't have it either, they have ME but have been indoctrinated by American healthcare services never to believe in that, and think it's the reserve of the British using a funny name (Nakatomi et al's bran scan research from Japan, shows otherwise). And then to cap it al off, you then find out that many severe ME cases is riddled with Borrelia infection anyway, but isn't technically Lyme at all and is something 'new', that hasn't been published on yet so we're all left in the dark. As is the norm.

So really, when we are told in the future, here is your disease or you don't have this because this paper says this, it's all silly ,because no one knows who has what and I'm really feeling for the patients who don't have ME or CFS at all.

People with severe nutritional deficiencies, sleep disorders, mental illnesses, non 'ME' infections, undiagnosed MS as so forth. So many people will get tested for an alleged 'CFS' biomaker in the future and think ''but that researcher said they found the cause'' but of course, forgetting, they were misled, undiagnosed, or misdiagnosed to begin with, themselves and wasted decades joining 'CFS' groups waiting for a cure. It happens, time and time again.

I would hazard a guess if neuro ME cause was found, maybe only 10% of patients actually have it in 'CFS/ME'.
And of 'CFS' of the type Dr Lipkin studies? Who knows. Maybe only 60%. Which means millions of people in the next few years, globally will be gutted to find out, they don't have X,Y,Z when they thought they did.

That's why I avoid reading these blogs that use totally over top language to lure patients emotionally to become over excited, as it's only natural, desperately ill people want to be saved and read how this will happen. Collective mindset and all...
 

JAH

Senior Member
Messages
497
Location
Northern California
Hi, thinking out loud here in my reply...

I'd add in my thoughts that Dr Lipkin has no authority to rule out anything jn ME or CFS. (No doctor in the world does until patients are seen in clinic individually).

I was in one of his studies and had been screened by an expert , Dr Montoya.

No CFS criteria needs to have anything proven medically wrong with the patient. So what matters more, is if you personally have an abnormality detected, not someone who doesn't have it.

I have no idea what this means.

If we look at Dr Lipkin's CFS negative papers (pathogens) 'researching' X number of people with self reported symptoms (based on chronic fatigue), it's inevitable, logically, a negative paper will happen, even consistently.
To find anything in ME CFS, the patients needs to be properly diagnosed by an expert (such as Dr Peterson/De Meirleir/Kogelnik - researchers who do find consistent infections in patients I should add). Otherwise, if you just add people in your study from a blood draw collection with 'CFS' on a tick box form,

A "tick box" made me chuckle, if you had seen the number of forms I had to fill out for the studies I've been in (though the I will brag and say the person running the test said I was the fastest filler outer....). Plus the amount of blood that was drawn. And it's not like Montoya just takes any person off the street who says they are tired and takes them on as a CFS patient - wait lists, referrals, blood tests, neuro tests. I'm not a fan boy of anyone. I am desperate, which is why I volunteer for studies, but to suggest that I can walk into a Dr.s office, say I have CFS/ME and get into one of Lipkin's studies is absurd. I honestly don't know why you would think that..
.
 
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Forbin

Senior Member
Messages
966
Below is an abbreviated description of the cohort used in Columbia's plasma cytokine study.
MATERIALS AND METHODS
Experimental design

Study population. Cases and controls were derived from two large studies of ME/CFS in the United States: a study supported by the National Institute of Allergy and Infectious Diseases (NIAID) of the NIH (cases, n = 147; controls, n = 146) and another supported by the CFI (cases, n = 203; controls, n = 202)
- - -​
NIH study case definition.
NIH cases were between the ages of 18 and 70 years and met both the 1994 CDC Fukuda criteria and the 2003 Canadian consensus criteria for ME/CFS, expanded in 2010. Additionally, all NIH study cases had a history of a viral-like prodrome before the onset of CFS and reduced functional status in two or more areas identified by the RAND36 survey.

CFI cohort study case definition.
CFI cohort cases were between the ages of 18 and 65 years and met either or both of the 1994 CDC Fukuda criteria and the 2003 Canadian consensus criteria for ME/CFS. Twenty-five percent of all CFI cohort study cases were re-recruited from the NIH study.

http://advances.sciencemag.org/content/1/1/e1400121
 

Mark

Senior Member
Messages
5,238
Location
Sofa, UK
Below is an abbreviated description of the cohort used in Columbia's plasma cytokine study.
Thanks for that Forbin. Lipkin's cohorts were also drawn from some of the best and most respected ME/CFS physicians in the US (including Dr Peterson, who Research 1st mentioned above as a good physician to draw cohorts from). So characterising them as weak cohorts does seem a bit bizarre. Lipkin's also a really top and internationally-renowned researcher, and his team's methods in their studies go way beyond the quality of research were are used to in ME/CFS studies. The enthusiasm shown towards the work of Lipkin, Hornig and Co by members of our community with scientific backgrounds is simply a reflection of the quality of that work.
 

msf

Senior Member
Messages
3,650
I´ve forgotten, did they see how the different study populations affected the results they obtained? I believe Research 1st has more of a problem with the criteria for the CFI study.
 

Sidereal

Senior Member
Messages
4,856
This bizarre and unfounded attack on Lipkin's cohorts seems to originate with Mikovits who claimed in her book that real ME patients were excluded. The reality is just the opposite, as you point out, Mark. The patients were carefully screened and hand-picked by some of our best clinicians. I'm afraid some people just can't accept that their favoured pathogens weren't found so instead of accepting that their hypothesis has failed and moving on, they choose to attack Lipkin.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,104
Location
australia (brisbane)
Nk function isn't a 100% cfsme only biomarker , but using nk function and other immune tests with the CCC would help clear the water and give a more true group of people to research. Why dont they use any of these? Its like they want to keep the water muddy.

Some are going to say they arent exclusive biomarkers , well many illnesses have biomarkers that arent exclusive , but combining a few with a good symptom criteria is a big improvement on selecting patients .
 

msf

Senior Member
Messages
3,650
I don´t think this is just a problem with Lipkin´s research - it goes back to the lack of a set of universally-accepted criteria. I actually think Lipkin´s cohort is more ´ME´ than ´CFS,´ but I am slightly worried that enough ´CFS´ patients have infiltrated the study to make some of the differences non-significant/less pronounced. I think this may mean that it will take longer for Lipkin to find out what is wrong with the ´ME´ patients than it would if he had managed not to include any ´CFS´ patients.
 

Gijs

Senior Member
Messages
691
Thanks for that Forbin. Lipkin's cohorts were also drawn from some of the best and most respected ME/CFS physicians in the US (including Dr Peterson, who Research 1st mentioned above as a good physician to draw cohorts from). So characterising them as weak cohorts does seem a bit bizarre. Lipkin's also a really top and internationally-renowned researcher, and his team's methods in their studies go way beyond the quality of research were are used to in ME/CFS studies. The enthusiasm shown towards the work of Lipkin, Hornig and Co by members of our community with scientific backgrounds is simply a reflection of the quality of that work.

Lipkin used spinalfluid from Peterson. This is a very specific subgroup Marco.
 

msf

Senior Member
Messages
3,650
Lipkin used spinalfluid from Peterson. This is a very specific subgroup Marco.

This is also a good point. It would have been better if the outbreak cases of ME were seperated out from the sporadic cases.