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Subsets of ME/CFS

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
:) It seems, yet again, we are waiting on Lipkin et. al. . We are definitely waiting on something. Sooner or later the findings explaining what is actually going on will be found. I do not trust the CDC either, but in one sense it is not about trust. Either they will, or they will not, do the research properly. We wont know until after its released. Should they stuff up again I will not be surprised, but there is no guarantee that will happen, especially since they know we are going to be looking at any claim from them very very carefully.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
One question though is this unique to ME/CFS? There's been a few studies now of nk cells in us compared to healthies - but what about compared to say MS, other immune dysfunction illnesses, autoimmune illnesses etc. It's great to be able to point to as a biological indicator of illness but it's not going to be a marker if it's not distinct

There are two issues here. The first is that it has not yet been shown to be unique, only unique as far as we know. If its unique and nearly universal in ME, then its a diagnostic biomarker. The science is not there yet, but its progressing.

The second point is that if its not unique then its about pathophysiology, not causation. Its still important.

PS Third possibility. It might not be unique, but it might be unique in combination with one or more other factors. In that case the diagnostic biomarker is actually a multiple marker test.
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
If you google cfs leaky gut, cfs gluten, cfs lyme, cfs candida, cfs mold, etc etc, you'll find these subgroups have been around
for a long time. I found it in 2005 when I first logged onto the web and started researching my cfs but I don't
know how long the info has been available to medical professionals.

I'm seeing that some pwcs heal via treating their other dx but some don't. Genes, environment, finances, etc can
be contributing factors for why some don't heal, but also the fact that these root causes haven't been fully researched plays a role. From what I've seen even celiacs, ie gut damage, aren't tested for nutritional deficiencies, parasites, bad bacteria, etc.

The only
reason I started reasearching cfs, leaky gut, etc is that my GP explained food intolerances to me and gave me a handout
on how these can cause a multitude of symptoms. It was called the leap program and she'd been using it for
years on other patients so she knew it could help. I didn't hear about it until I'd seen a gastroenterologist
for months who was clueless and I couldn't stop losing weight. I was a size 2 by then and everything
I ate was going right thru me.

That wasn't until 15 1/2 years after becoming disabled with cfs.
Granted my cfs specialist had recommended the elimination diet in 1992 but I didn't see any difference
so I gave up on that. I'd already spent $2500 on a naturopath who used a machine to tell him what foods
I was sensitive to and that didn't work so I was leary of the food angle. Duh ! I really missed an opportunity
there.

For me, and many others, the puzzle peice missing at that time was to eliminate gluten, not just wheat. My GP made that
same mistake in 2005. That info was on the web thanks to patients.

I see an integrative doctor and would love to know what that group has found. They look for root causes.
Based on my experience Medicare should have a great data base on this. That could save time
and money on determining subsets.

Tc .. X
 

Nielk

Senior Member
Messages
6,970
:) It seems, yet again, we are waiting on Lipkin et. al. . We are definitely waiting on something. Sooner or later the findings explaining what is actually going on will be found. I do not trust the CDC either, but in one sense it is not about trust. Either they will, or they will not, do the research properly. We wont know until after its released. Should they stuff up again I will not be surprised, but there is no guarantee that will happen, especially since they know we are going to be looking at any claim from them very very carefully.


On September 10th, the CDC will have a conference call with Drs. Unger and Lipkin. http://forums.phoenixrising.me/inde...erence-call-including-unger-and-lipkin.24743/

We can e-mail in our questions in advance. Maybe we can ask about this?
 

Nielk

Senior Member
Messages
6,970
If you google cfs leaky gut, cfs gluten, cfs lyme, cfs candida, cfs mold, etc etc, you'll find these subgroups have been around
for a long time. I found it in 2005 when I first logged onto the web and started researching my cfs but I don't
know how long the info has been available to medical professionals.

I'm seeing that some pwcs heal via treating their other dx but some don't. Genes, environment, finances, etc can
be contributing factors for why some don't heal, but also the fact that these root causes haven't been fully researched plays a role. From what I've seen even celiacs, ie gut damage, aren't tested for nutritional deficiencies, parasites, bad bacteria, etc.

The only
reason I started reasearching cfs, leaky gut, etc is that my GP explained food intolerances to me and gave me a handout
on how these can cause a multitude of symptoms. It was called the leap program and she'd been using it for
years on other patients so she knew it could help. I didn't hear about it until I'd seen a gastroenterologist
for months who was clueless and I couldn't stop losing weight. I was a size 2 by then and everything
I ate was going right thru me.

That wasn't until 15 1/2 years after becoming disabled with cfs.
Granted my cfs specialist had recommended the elimination diet in 1992 but I didn't see any difference
so I gave up on that. I'd already spent $2500 on a naturopath who used a machine to tell him what foods
I was sensitive to and that didn't work so I was leary of the food angle. Duh ! I really missed an opportunity
there.

For me, and many others, the puzzle peice missing at that time was to eliminate gluten, not just wheat. My GP made that
same mistake in 2005. That info was on the web thanks to patients.

I see an integrative doctor and would love to know what that group has found. They look for root causes.
Based on my experience Medicare should have a great data base on this. That could save time
and money on determining subsets.

Tc .. X


I'm confused when I see Lyme/CFS, since Lyme and CFS have many symptoms in common, how does one know that they have both? The same with DES and others.

@X - Does Medicare cover integrative doctors?
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
Some integrative docs take medicare. Mine did
at first but isn't now. All of my integrative tests
have been covered. cdsas, saliva, etc.

I don't know how llmds distinguish lyme from cfs.
I'm not sure yet how my doc is looking at my cfs
dx since I'm positive for so many other illnesses
that could explain my fatigu etc. imho my pots
could be responsible for my cfs fatigue brain fog, etc
since i feel healthy supine most of the time and only
feel sick when I'm upright. My pots could be from
multiple probable permanent problems - heart, lungs, brain damage ...
 

Sparrow

Senior Member
Messages
691
Location
Canada
Was that the NK cell function test, which is a research test and not easy to get, or the NK cell number test which is the more common one? As I recall, many PWME have normal NK cell number, but poor function.

Or maybe you are one, like me, who has low CD8 cells instead...? Or neither, of course. :)

It was done through Klimas's lab, and I'm pretty certain it was a function test. There's plenty wrong with me to go around, though. ;)
 

Sea

Senior Member
Messages
1,286
Location
NSW Australia
They did mention doing a study to compare nk function, nk bright and nk dim cell function of cfs/me and compare it to MS and RA patients, so the question has been asked and i suppose we have to wait until they get the funding and start. I dont know at what stage they are at with this.

I'll have to add that to my list of questions for them next time I give them some of my blood.
 

SOC

Senior Member
Messages
7,849
It was done through Klimas's lab, and I'm pretty certain it was a function test. There's plenty wrong with me to go around, though. ;)

Yeah, they do both the number and function tests there. So you and I are among the patients without NK cell dysfunction. I wonder how many of us there are. Did you get CD8 (cytotoxic T-cells) numbers in your test? Are yours low, too? Or are you your own kind of special? ;)
 

Nielk

Senior Member
Messages
6,970
My natural killer cell function tested by Dr. Enlander (through Quest Diagnostics) is low: 3 ref range 8-170
 

Ember

Senior Member
Messages
2,115
These subsets though can't be anther illness because then they would not be considered ME/CFS to begin with.
Don't you consider mycoplasma pneumonia to be a subset of pneumonia? According to the CDC, it's the leading cause of pneumonia in school-age children and young adults. Yet the CDC lists it separately, MP being distinct from other forms of pneumonia. ME too should be listed separately from other forms of CFS.
 

Nielk

Senior Member
Messages
6,970
Don't you consider mycoplasma pneumonia to be a subset of pneumonia? According to the CDC, it's the leading cause of pneumonia in school-age children and young adults. Yet the CDC lists it separately, MP being distinct from other forms of pneumonia. ME too should be listed separately from other forms of CFS.


Maybe it should. The truth is that it is all very confusing. We are all ill - at different levels of severity. We all want to feel better/to find proper treatments. The more I delve into this and look at everything that is out there, the more confused I get.
Patients from the outbreaks feel that the disease is theirs and we have hijacked it from them. The ME purists think that the CFS "lobby" hijacked their disease. No one wants chronic fatigue - I am pretty sure about that.
What confuses me about finding subsets is that I always thought that this was a complex multi-system disease. It involves the autonomic, immune and neurological systems. Whenever there is a disease that affects multi systems like Lupus, there are going to be so many different manifestations of the disease. This does not mean that it is different, separate diseases. It just means that it can look different in a variety of patients.

One patient might have more neurological involvement whereas another's immune system can be shot. It is still the same illness.
 

Ember

Senior Member
Messages
2,115
One patient might have more neurological involvement whereas another's immune system can be shot. It is still the same illness.
The subsets of ME have yet to be studied. Here's what the ICC suggests:
Classifying patients by subgroups to enable the comparison of patients within the diagnosis of ME may be helpful in some studies.
  • 1 Onset: acute infectious or gradual.
  • 2 Onset severity may be a good predictor of severity in the chronic phase.
  • 3 Symptom severity: mild, moderate, severe, very severe.
  • 4 Criterial subgroups: neurological, immune, energy metabolism/transport or eclectic.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
One question though is this unique to ME/CFS? There's been a few studies now of nk cells in us compared to healthies - but what about compared to say MS, other immune dysfunction illnesses, autoimmune illnesses etc. It's great to be able to point to as a biological indicator of illness but it's not going to be a marker if it's not distinct

Id like to point out that many illnesses dont have a unique one for diagnosis and hence they are diagnosed using a set group of markers in which people may need 3-4 different things showing up on test results. Why couldnt it be the same for us.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
The subsets of ME have yet to be studied. Here's what the ICC suggests:

That's thou further grouping down of those who actually are broken away from the "CFS" group, the ME people. It would be no good to break down a very mixed group of CFS patients who may not even have ME in that way.
 

Mij

Messages
2,353
Maybe it should. The truth is that it is all very confusing. We are all ill - at different levels of severity. We all want to feel better/to find proper treatments. The more I delve into this and look at everything that is out there, the more confused I get.
Patients from the outbreaks feel that the disease is theirs and we have hijacked it from them. The ME purists think that the CFS "lobby" hijacked their disease. No one wants chronic fatigue - I am pretty sure about that.
What confuses me about finding subsets is that I always thought that this was a complex multi-system disease. It involves the autonomic, immune and neurological systems. Whenever there is a disease that affects multi systems like Lupus, there are going to be so many different manifestations of the disease. This does not mean that it is different, separate diseases. It just means that it can look different in a variety of patients.

One patient might have more neurological involvement whereas another's immune system can be shot. It is still the same illness.

This is true. Also, the length of time a patient has been ill is important too, different body system abnormalities become more apparent or change over time. I did not have obvious cognitive problems for the first 12yrs, no insomnia issues, PENE was nothing back then compared to how it affects me now.