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Subsets of ME/CFS

Discussion in 'General ME/CFS Discussion' started by Nielk, Aug 26, 2013.

  1. Nielk

    Nielk

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    The newest buzword around ME/CFS seems to be "subsets". We are told that there is a need for subsets of ME/CFS since it is such a heterogeneous disease. We can't have proper studies nor diagnostic criteria because we are too heterogenous.

    These subsets though can't be anther illness because then they would not be considered ME/CFS to begin with.

    I think that many major studies now like the one from the CDC are trying to find subsets. Stephen Holgate seems to think it might be a dozen diseases. My question is what then? What if they find 12 different subsets. Will we all be divided into different little diseases with different names and diagnostic criterias? We still would not have biomarkers. We would just be sub-classified.

    How will they identify these subsets? Will it be by the most intensive symptom? Will it be by what treatment has worked? They can't exactly go by abnormalities in testing because there are no abnormalities that everyone can agree on.

    What do you think?
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  2. August59

    August59 Daughters High School Graduation

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    I don't think it will be 12 subsets, but I clearly see what you are saying. My guess is closer to 6 or 7.
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  3. taniaaust1

    taniaaust1 Senior Member

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    The subsets could end up with their own biomarkers, one of the issues with biomarkers has been cause the ME/CFS patient group is so heterogeneous.

    I think too once they pull out subsets, as it will help them indentify the issues going on in those subsets more, they could well be then given new names and some could be separated out of the ME/CFS group (just like GWS is given its own name and separated from us.. same probably would end up happening with some of the groups). I personally think that some of the subsets are actually atypical presentations of other diseases which once pulled out will end up being recognised (maybe the EDS subset group is one of those).

    They probably would take everything in account when identifying the subsets. How would one even go by the most intensive symptom when for many of of that changes quite often or there isnt one particular one which stands out the most. Many of us have "groups" of bad symptoms. Maybe they will look at the symptoms as a group??

    Anyway, I'd think that the EDS group is one subset, there is another subset which also has coexisting thyriod issues too (they've been also found to have osteroporsis and at extremely high risk of getting thyriod cancer), and of cause there is also the autonomic dysfunction subset which could be pulled out by tests from the others, the immune system issue subset (that one is found by tests eg poor NK cell function etc..this would be like also the "virally" subset with reactivating viruses). Of cause some have more then one subset so probably will be classified in more then one catagory till more is known.

    I personally do think tests will be used to help separate out many of the subsets as many of our abnormalities are testable. The bonus of this if they offically subset, is that will force doctors to have to do more testing on us to work out what subset we are in (which solves the current issue where so many of us cant get the tests for the abnormalities we know we do have, it could make things like tilt table testing an offically recommended ME/CFS test).
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  4. ukxmrv

    ukxmrv Senior Member

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    Subsets isn't a new buzzword though is it? Pretty much started up as soon as the idea of CFS was invented.
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  5. taniaaust1

    taniaaust1 Senior Member

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    :) I was just about to add saying that to my post and saw you'd beat me to saying it.

    I think some have for a very long time ignored that there are subsets in this illness be it throu fear of being left out of things (eg "what if I dont fall into a common subset?") or whatever. It hasnt just been many of the medical profession which have stopped things from moving forward and things from being separated out from the rest, but fears from some of the patient group themselves. eg Many didnt and some still dont want ME to be separated from CFS and defined out from that. Hopefully people are now starting to see the sense in subsets and distinishing the individual groups which still are being put under the label of ME/CFS. Some of these are quite likely to be given new names and maybe pulled out from the CFS banner completely.
  6. Allyson

    Allyson Senior Member

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    I agree entirely - there are too many differences among us that have not been explored yet
    this is no-one's fault is is just such a huge multi-systemic disease it I hard to get a handle on

    SOme things I think are worth looking at

    Why do some get nausea and vomiting while others do not?

    WHy do osme have swollen lymph glands while other never do?

    Why are many of us hypermobile ( double jointed, bendy, very flexible, while others are not - and usually the opposite if not - ie very stiff

    Why does vitamin IM B 12 help so man of us while it does nothing for others

    WHy do some of us have a low blood volume?

    Have we all been tested for OI/ POTS? If not, why not- as these are important conditions that need to be treated.

    Why do some of us have perfectly well days occasionally while others never do?

    As anid example of some sub-sets, n Australia many are now being re- diagnosed with Lyme, and Ehlers-Danlos Syndrome. Moset with EDS have POTS, many Lymies do too - some may have EDSAND Lyme - EDS cn make you more susceptible to illnesses so Lyme could be one of these.

    Good question you raise thanks NielK

    cheers,

    Ally
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  7. SOC

    SOC Moderator and Senior Member

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    The idea of subsets has been around for a while, but now the medical researchers are focusing on it because they understand the need for it in successful research of medical (as opposed to psychiatric) treatments. Apparently only psychiatric researchers don't understand the importance of carefully defining your sample set. No biomedical researcher wants their research effort to fail because their sample set was too diverse to get a consistent result.

    I don't know that we are going to see clearly defined subsets very quickly, although I hope I'm wrong. What I think is more likely is that researchers won't use "ME/CFS patients" as their sample set. Instead, they'll select a subgroup that seems likely to coincide with their research goal, such as ME/CFS patients with POTS, or ME/CFS patients with low NK cell function, or ME/CFS patients with high EBV titres.

    I'm fairly confident that all of us currently under the ME/CFS umbrella do not have the same illness. Part of that is because I think a substantial portion of us are victims of known, but undiagnosed illnesses. In other words, I'm sure a large number of us are misdiagnosed. Once that group is removed, I don't know if the rest of us have the same illness or not. I'm tempted to think not, but I also wonder whether our differences could be due to a) different stages of illness, or b) different secondary infections.
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  8. taniaaust1

    taniaaust1 Senior Member

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    Alison, your post brought up to me that with each subgroup they make, they may find high rates of certain misdiagnoses in each of those groups.

    Eg a POTS ME/CFS subgroup would have as you pointed out have much missed Lyme and EDS, where as a different CFS subgroup may not have these other illnesses coming into the subgroup. So each subgroup would have some things which need to be much focused on to doubley make sure they arent the cause of the issues in that subgroup.

    Maybe an EDS subgroup could override that person being put into a POTS subgroup? seeing the POTS would be part of that anyway.

    Im so looking forward to seeing them subgroup to see what they come up with (thou I'm going to no matter what they do, probably just see myself as having ME according to international consensus criteria as that is where I do feel like I fit).
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  9. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Im going to bring up nk function again, sometimes i feel like i harp on it too much but it seems to be a common finding in cfs/me and doesnt appear to be only a sub set that have this abnomality, also they are finding cd8 t cell dysfunction as well. It would be interesting if nk function testing was more widely available as i think this is the biomarker that may tie the sub sets together but to get the right treatment for co-infections and or pots/oi, then maybe we will be broken into subsets

    Lets say for eg this illness is renamed neuroimmune illness and one has to fit the CCC as well as have abnormal nk function and or cd8, maybe some other tests for example. We are all going to have our own quirky things going on so one could say they have a neuroimmune illnes with pots/oi and ebv reactivation or neuroimmune illness with EDS and mycoplasma infection. Something i have mentioned in another thread, i would have a neuroimmune illness with ebv/cmv reactivation and neutropenia??

    I think a very high percentage of us are going to have the nk and cd8 dysfunction but what we end up with at the other end is going to be different.
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  10. Sparrow

    Sparrow Senior Member

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    Subgroups are recognized in many different illnesses. I think how they refer to them will depend on how different the illness processes turn out to be from each other. I suspect some will end up lumped together under the ME umbrella (or whatever the more appropriate new name ends up being once we actually understand what's going on), and some will either be their own thing or will end up under the umbrella of other existing illnesses.

    For what it's worth, I've got severe ME, with piles of the hallmark symptoms and a diagnosis confirmed by specialists in the field. ...But my NK came back normal when it was tested. May not always be normal (I didn't retest it), but I was quite sick then and not taking any immune modulators. I was really surprised when it didn't show an abnormality. Something is clearly wrong with my immune system function, just apparently not that.

    So there may be at least one subgroup that doesn't have that type of immune dysfunction.
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  11. SOC

    SOC Moderator and Senior Member

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    I think you're right. One thing that puzzles me, though, is why some of us have NK cell dysfunction and others have CD8 dysfunction. I'd guess it's different illnesses with similar results except that daughter and I had the same flu-like illness at the same time, have basically the same symptom set and yet she has low NK cell function and normal CD8 numbers and I have high NK cell function and low CD8 numbers. Weird. o_O

    This sounds likely to me. :)
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  12. SOC

    SOC Moderator and Senior Member

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    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. :)
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  13. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Generally nk function tests are only done in a research setting or if u see klimas, rey or peterson or someone of that calibre. My nk numbers fall within normal range but my nk function is around the 1 with normal being above 5 on the test i had which was my bright cell nk function, my nk activity at the same time was 2 with normal ranges of 13.8-34.8.
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  14. alex3619

    alex3619 Senior Member

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    The Fukuda criteria paper presumes that further development would be on subsets, but it never happened. I have long wanted all the myriad findings to be tested in one group, side by side, to see if they cluster. My guess is they do.
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  15. August59

    August59 Daughters High School Graduation

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    Whatever happens with subsets, I'm going to follow hopefully in behind the CFI-Lipkin studies as I do not trust anything the CDC is going to try and throw in the ring because they just are not competent.

    I wish the would give at least a vague update as to how that study is going since it will be a long time before that study report is released.
  16. Allyson

    Allyson Senior Member

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    yes agreed and as sparrow says other illnesses have subsets

    MS has 6 distinct types for example

    EDS has several different types - anywhere between 7-15 now, and with frequent crossovers between the groups

    maybe for this reason genetic testing and the human genome project will be important - will sort out the types and illnesses definitively - and soon I hope.


    Ally
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  17. August59

    August59 Daughters High School Graduation

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    NK cell function is going to be involved in some way. Too many of the credible researchers have commented that the innate immune system is flawed or malfunctioning.

    I still believe the CFI-Lipkin study will yield results that they themselves are not going to expect. I'm not saying that is a bad thing either. They may find 2 or 3 things that can probably be attended to and make many of us feel like we have not felt in a long time. I don't think it will be a quick fix, but very possible a goal to look forward too if we commit to doing things. The hard part will be getting the medical community hold up their end of the bargain because 50% will scoff at the findings demanding immediate replication.

    Hopefully things will go well, except from what I've read is there another half-hearted CDC study in the works that can't possibly give us an answer to our problem.
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  18. Sea

    Sea Senior Member

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    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
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  19. Allyson

    Allyson Senior Member

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    yes very good point Sea.

    Ally
  20. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    well supposedly griffith university who are the same researchers from bond university who did the nk function testing found that bright nk cell function is low which is narrowing down the specific nk function and this was compared with a healthy population group.

    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.
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