alex3619
Senior Member
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- 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
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.
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
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.![]()
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.
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.![]()
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.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.
The subsets of ME have yet to be studied. Here's what the ICC suggests:One patient might have more neurological involvement whereas another's immune system can be shot. It is still the same illness.
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.
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
The subsets of ME have yet to be studied. Here's what the ICC suggests:
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.