"CFS"-What's in a name?

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by Ronaldo60, Feb 22, 2013.

  1. Ronaldo60

    Ronaldo60 Member

    The Mayo Clinic's current definiton of CFS is virtually identical to what it was decades ago. Fifty years ago there was "unexplained chronic-fatigue" and forty years ago, they called it "post-viral chronic fatigue." Then came "Chronic-Fatigue Syndrome" and "The Yuppie Flu." Shortly after, the illness became associated with Epstein-Barr virus. Then, "CFIDS" appeared, adding "immune-dysfunction" to the pie. But despite the variety of names, the common denominator was always a viral-type illness (or other stress/trauma) as the trigger. Just wondering what has changed and why we don't seem to discuss the viral aspect or other issues that trigger the onset of CFS? Have all the new sub-groups, definitions, etc., really helped the situation or just made it more complicated? And, with the percentage of women outnumbering men by a huge margin with this syndrome, how can we continue to ignore the role of hormones?


    [This Message was Edited on 03/03/2013]
  2. LadyCarol

    LadyCarol Member

    Trying to ascertain the trigger for CFS for any given person is a tough one. For some the cause can be ascertained, alas for too many others a specific cause all too often cannot be definately found (as happened with me).

    The virus query is a good point though. There are only a certain number of known & identifiable viruses, many more are anticipated to exist but haven't yet been identified/found. Vaccinations for some viruses exist (e.g. Flu) but many viruses have no vaccination (yet).

    As for the name CFS, well ME is another such name, but sadly not many people can pronounce the name in full let along understand what Myalgic Encephalopathy actually is, especially people who don't know much about health issues.

    We may as well call it something like TRASH (Terribly Ridicules Autoimmune System Health), it's self-explanatory and means there is nothing to explain to non-believers.
  3. Ronaldo60

    Ronaldo60 Member

    And by the way, I think "Myalgic Encephalopathy" as a title is really beyond stupid and doesn't help patients at all trying to gain credibility with docs and public also.
    Curious as to what happened in your case; my field of interest is with the stress-hormones and what I find often overlooked is that CFS has such a high percentage of women sufferers, why not start looking at hormonal issues?
    Adrenal fatigue and receptor burnout seems to be a very important aspect that's never really gotten enough attention. I was very lucky years ago to have a miracle "cure" in four days from an unrelated treatment, which got me interested in adrenal hormones.
    Another area of interest is in "non-reactive hypoglycemia" which anyone can test for and is another possible indicator for adrenal fatigue.
    Ron
  4. LadyCarol

    LadyCarol Member

    I wish I had an easy answer for you but in my case it was a lot more than hormonal issues. A few years ago I got hit by a massive onslaught of illnesses until I finally collapsed in a heap. To cut a long story short I was diagnosed with ME, depression, insomnia, hyperthyroid, etc. but later after extensive blood testing we discovered I had early stage Leukaemia. My blood test results were a complete mess, so much was wrong it took a step by step approach to try to address each issue one by one, there was no composite solution available (still isn't).

    My life has never been the same and never will be, there is currently no known cure for the type of Leukaemia I have and chemo is likely to kill me and doesn't offer any chance of a cure. In addition all the other health issues are still present, some improve a little from time to time but then suddenly without warning everything goes awol.

    So what's in a name ? When/if we get hit with multiple health issues, whatever their original, it really doesn't matter what label we attach to the set of health issues. However, a label can be of help when describing a health issue to another person but all too often 3rd parties are clueless and are unable to relate unless they have actually experienced that particular health issue. Meanwhile we try to live day to day not knowing what horror the next hour or tomorrow will throw at us.

    I have struggled hugely over the years but I know that one day my suffering will end. On that day I know I will go and live with The Lord Jesus Christ and never again will I suffer ill health, in Him I trust with my life.
  5. Ronaldo60

    Ronaldo60 Member

    ...and it seems you are struggling with much more than our typical CFS-issues. I hope you and your doctors can find your solutions.
    best,
    Ron
  6. LadyCarol

    LadyCarol Member

    Thank you.
  7. MicheleK

    MicheleK Member

    Hi Ronald,

    If you haven't watched Dr. Nancy Klimas and other clinicians recent discussions and presentations of the latest studies they have done, and what it has revealed as far as activity in the immune system that is showing the difference between men and woman with the illness, I highly recommend watching it. Here is the video link:

    http://www.nova.edu/promo.html?id=klimas?video=oit/nim/klimas.mov?title=The%20Institute%20for%20Neuro%20Immune%20Medicine&subtitle=Chronic%20Fatique%20Syndrome%20and%20Gulf%20War%20Illness

    I have had ME/CFS for 20 years now. I did not start the illness with a virus, but was undergoing tremendous, long term, emotional stress for over a year.

    I was feeling quite run down but still able to function well when I was exposed to" Kilz It" painting primer while doing my son's room. It affected both of us but from that night on I became ill from that toxic exposure. My son was fine ten minutes after getting out of the room we were painting.

    I am convinced that the ongoing intense emotional stress weakened my immune system and started me on the long, arduous road of living with ME/CFS.

    Others may come down with a virus and the illness begins. Still others have different triggers that start the illness off in them. It is becoming more and more clear through the research done in the last couple years that there are a number of different subgroups with this illness. Not all begin with a virus, though many of us end up struggling with reactivated viruses in our system due to the immune system dysregulation.

    The spinal fluid studies done by the doctors Light were very insightful. Dr. Broderick's work sheds even more light on emerging biomarkers with this illness. And the repositories of Dr. Peterson and Klimas along with Dr. Ian Lipkin's samples should prove to give us even more specific information on what exactly is going on inside us.

    Of course these studies are making it even more clear that this "wastebasket diagnosis" that is called CFS, consists of different subgroups.

    The next couple of years should prove quite interesting as studies are completed and the findings are published.

  8. Ronaldo60

    Ronaldo60 Member

    And I still find it so interesting that the common factor in CFS, FM, Gulf War Syndrome, and Post-Traumatic Stress Disorder is often the adrenal stress-hormone disruption often discussed and treated by endocrinologist Jefferies years ago. The stress-hormone connection still seems to be an almost taboo subject after all these years and so many studies. What other scenario offers both cause and treatment?
  9. IanH

    IanH Active Member

    Adrenal fatigue will cause chronic fatigue but that is a different pathology. It is an error of logic and data interpretation to say that ME/CFS is adrenal fatigue.

    It is also an error made by many trying to boil ME/CFS down to a single cause while ignoring key data in the literature.

    We recently had someone on this forum claiming that ME/CFS was caused by protease dysfunction even in the absence of data which suggests that.

    It is good to theorize but theories must fit the data not oppose it.

    Data tells us pathogens are probably involved in one way or another:

    Just because a pathogen cannot be identified does not mean there is not one causing a problem. Also there have been many different pathogens identified in ME/CFS in different cohorts:
    HHV6, HHV7, HHV5, PVB19, HERV-K18 as well as various entero-viruses and entero-bacteria.

    What we do not know is whether they are the primary cause or a secondary effect from the immune dysfunction. all evidence points to consequence (and therefore a secondary cause of some symptoms) not primary cause.

    One of the most consistent findings is low natural killer cell cytotoxicity
    NK cytotoxic activity is significantly decreased in CFS/ME, Additionally, the CFS/ME patients have significantly lower numbers of CD56 bright CD16- NK cells.

    I know of no mechanism in which adrenal output can possibly lead to this data.

    Another consistent finding in people with ME/CFS is high levels of IFN-gamma (Interferon-gamma), a pro-inflammatory cytokine and various pro-inflammatory interleukines which all cause low grade, non-CRP inflammation. No CRP indicator is why for a long time it was not believed that ME was inflammatory. Please tell me how adrenal fatigue leads to elevated IFN-gamma. I know of no mechanism.

    The gut flora imbalance is common but does not occur in all cases of ME/CFS. when it does occur the symptoms are clear, symptoms which are like IBS. Some studies have shown the presence of "leaky gut" which can be helped using high quality Bovine colostrum + melatonin. (Melatonin is a major gut healer in our body) and selected pro-biotics. However, even though this can be very successful in changing the gut flora and gut symptoms the ME/CFS does not go away. John Chia created a pharmacological preparation called "equilibrant" which some people have found helpful in removing gut pathogens and reducing symptoms but not a lot of people have found this successful.

    The persistently high IFN-gamma causes mitochondrial membrane depolarization which in turn affects energy production (ATP synthesis) and glutathione production within the mitochondria. This in turn leads to poor ROS (reactive oxygen species) clearance. A toxic load produced naturally by the energy system in the mitochondria. When severe, this leads to MCS and a hypersensitivity to common aerial and food borne toxins. However most people with ME/CFS have some degree of toxin hypersensitivity. I know because it my job to identify this in people with ME/CFS when they are not aware of it, in order that they may better identify these triggers of malaise.

    High levels of IFN-gamma in viral infections such as the flu are why you crash and feel weak and sick. It may be a deliberate mechanism to slow us down when we are infected. However in ME/CFS something in the system is causing persistently high IFN-gamma as well as low NKC function. We simply cannot get rid of the "irritant"

    Attempts have been made to treat ME/CFS with glucocorticoids with very little success. I was on them for 14 months, did nothing for me except reduce my pain about 50%. We have had several people through our clinic who have been treated with glucocorticoids without success, in fact some said while the cortisone helped initially they got worse over time. In addition I know of no known mechanism to explain why adrenal fatigue would cause low blood volume and cerebro-cortical shrinkage.

    While stress is clearly involved in ME/CFS, it is in many illnesses. Most data suggests it is an exacerbator of symptoms however it may be a contributor to the origin of the disease in conjunction with the immune dysfunction. But I doubt that it is an obligatory risk factor because I know many people with ME/CFS whose stress levels and cortisol homeostasis was perfectly normal before and after the came down with ME/CFS.

    The upshot is we know that viruses, bacteria and toxins are all involved in the symptoms but they all appear to be a consequence of the immune dysfunction. However the pattern of immune dysfunction is typical of a viral problem. Sometimes known as a "super-antigen" which can be formed from persistent stealth viral infection like that caused by retroviruses.

    Most evidence now points to an immune system disease in TRUE ME. Bearing in mind that the diagnosis is a still very unreliable and picks up people with other illnesses.

    [This Message was Edited on 02/27/2013]
  10. sascha

    sascha Member

    covered a lot of ground- thank you.

    i have a question, re: blood clumping (red blood cells sticking together). how does this figure into the picture? i've seen my red blood cells sticking together under a microscope.

    makes sense that this of course would block oxygen being delivered around my body and to my brain, and could account for many cfids symptoms.

    anyone here able to comment on this? also any treatment ideas?

    thanks, Salome
  11. tamsyn

    tamsyn Member

    Yes, I too have seen my blood cells clumping together under a miscroscope; also, many of the cells were deformed in shape. But I have no idea what this means in terms of cause or of effect.

    As regards what 'causes' ME in the first place, my understanding is that there are various routes of causation: some people have disordered endocrine systems, others have suffered physical trauma from accidents, still others caught a viral infection etc. Dr. Gupta in London UK believes that any of these stressors can over-activate our amygdalas and affect our CNS. I have found his 'amygdala retraining program' helpful in mangaing my ME on a daily basis but it's far from a 'cure.'

    After countless frustrating years asking 'why?' (why did I get this? why me?) I finally decided to simply have the best quality of life under the circumstances. Spending vast amounts of time and engery trying to figure out 'why' seemed counter-productive...that's just my subjective experience.
  12. IanH

    IanH Active Member

    In general erythrocyte aggregation (red cell clumping) is associated with inflammation. So if you have a general inflammatory state such as high IL-2 orIFN-gamma you would expect to see aggregation. This has been tested in ME/CFS but not found to be significantly different from normals.



    You can read a little about it here from the the labs of the worlds immunological ME experts:

    http://www.mecfs-vic.org.au/initial-results-bond-university-academics-working-unearth-faster-diagnosis-cfs

    To my knowledge no one else has done any more research into this.

    However I suspect that the EAgg varies depending on exercised state. If you exercise, then IL-6 rises and if this rise is prolonged as in ME/CFS it is possible that some people will show increased EAgg after the exercise. As you know, even a small amount of exercise in ME/CFS is probably a large amount compared to normals.

    It may be that some people with significant aggregation may have another pathology like diabetes, an infection such as found in gut dysbiosis.

    ESR (erythrocyte sedimentation rate) is also a correlated measure of aggregation and ESR is usually normal in ME/CFS but can vary a little over time, possibly depending on infection and inflammation variation in ME/CFS over time. You can consult Nancy Klimas on this. I don't know if Ekua Brenu in the above studies has found anything different from those results in his 12 month study.

    So in summary, ESR and EAgg are not indicative of ME/CFS.
    [This Message was Edited on 02/27/2013]
  13. Ronaldo60

    Ronaldo60 Member

    And obviously we're not dealing with one simple cause or cure. But based on my own very dramatic result years ago which led me to Dr. Jefferies, I'm still convinced that many CFS patients are missing-out on an effective treatment. You can't discount Jefferies' amazing career or medical textbook "Safe Uses of Cortisol" which is in its third printing since '83 and based on his experience with "over 2,000 patient-years using safe physiologic doses of cortisol." He had lots of success treating CFS and personally used a small daily dose for over twenty years and was very active, (even skiing) into his eighties. He would routinely prescribe a two-week, low-dose trial for most of his patients with "unexplained chronic-fatigue," post-viral chronic-fatigue, or CFS.
  14. sascha

    sascha Member

    for the most wonderful and comprehensive 1:1 correspondence between question and answer i've seen / gotten in ages. just great. Sascha
  15. tamsyn

    tamsyn Member

    Yes, I'd like to add my thanks to Ian too for such a succinct and clear answer...Ronaldo, the problem with cortisol is that doctors won't prescribe it no matter what a best-selling book might say. As with so many things, our doctors will only do what they personally are trained in, believe in, or know about -- I find many of them are very resistant to patients arriving in their offices with any ideas of their own -- even though we are told to 'take charge' of our bodies and health!!
  16. IanH

    IanH Active Member

    " He would routinely prescribe a two-week, low-dose trial for most of his patients with "unexplained chronic-fatigue," post-viral chronic-fatigue, or CFS. "

    It is important when citing clinical "results" that we consider how the definition/diagnosis of CFS was made. As you will read on the current (3/1/2013) cover page of PH of the research of Prof. Leonard Jason and Newcastle's Prof. Julia Newton that the case definition used is important. Many clinicians use the Fukuda criteria, many use their own criteria or no identifiable criteria at all.

    The only valid criteria for CFS is the modified Canadian criteria, all other criteria are invalid because of their over-inclusiveness. I don't know how many times I have seen people who were "diagnosed" CFS by bad criteria and should not have been diagnosed CFS. CFS is not defined by fatigue. One of the symptoms of CFS is fatigue BUT not always. However post -exertional malaise is. When post-exertional malaise is properly investigated, such as by Prof. Alan Light you see clearly why the malaise occurs. There is no cortisol change involved at all.
    The changes are in the many immune system markers, mainly rises in pro-inflammatory markers which keep some people "sick" for many days.

    Now, a clinician "diagnosing" CFS even 5 years ago will have been using poor criteria. Then to go on and treat them with glucocorticoids tells us nothing about its efficacy in CFS. It does tell us, that in some cases of chronic fatigue glucocorticoids will help, sometimes a lot. But that does not tell us that it "works" for CFS.

    One might argue that this does not matter as long as it helps. True, but when the assertion is that steroids can be used successfully to treat CFS it does matter because adding steroids to a person without need is very unwise and any medical practitioner is likely to steer well away from it.
  17. Ronaldo60

    Ronaldo60 Member

    "Safe Uses of Cortisol" was never a best-selling book, but a medical textbook written by a very noted endocrinologist who was treating chronic-fatigue of all sorts way back before "M.E," Fibromyalgia, and God-knows-what-we-have-these-days!
  18. Ronaldo60

    Ronaldo60 Member

    But I still believe there's a valid place for trying these meds in cases of "unexplained chronic-fatigue" and "post-viral chronic-fatigue" as Jefferies did quite successfully. I can't imagine that a two-week trial of low-dose cortisol could be dangerous, especially when weighed against the possible benefits. And, let's be honest, "The only valid criteria for CFS is the modified Canadian criteria" is a matter of opinion, however brilliant that may be (with all due respect!).
  19. IanH

    IanH Active Member

    The definition is a matter of definition not just opinion. We need to define this disease quite clearly otherwise it is a ratbag of different conditions probably with different causes. The purpose of the modified Canadian criteria is to weed out people with other conditions which have been included in CFS, particularly a problem in Britain where the Oxford criteria are used and end up including people with depression, anxiety disorders and other illnesses including hypothyroidism.

    CFS has a bad rap among the public and many medical practitioners. This urgently needs clarifying. Researchers need clear definitions to make sense of the data. Without that we will not move forward. Clinicians will always "try things" without any support of data, they have to try something but you cannot define a disease on the basis of a clinicians decisions/treatments.

    Right now, the modifed Canadian criteria defines CFS. Soon we will have biochemical markers that will define CFS and there will be arguments that some people are not being included. If they don't have the markers but have similar/same symptoms then the either their illness needs a new name or the biochemical markers will need modifying. Either way, with that we will be better off than we are now. Adrenal Insufficiency is a condition in its own right with many different causes. It can cause chronic fatigue as well as many other symptoms but not CFS and I have no problem with treating adrenal insufficiency with glucocorticoids except that better solutions are being sought.
  20. ljimbo42

    ljimbo42 Member

    what causes cfs/fm, and it does seem that to a large extent the criteria for diagnosis is not set in stone. So "Cfs-what's in a name"?

    My answer is, I don't know. If you ask the person that needs the help,I don't think they will care what you call it if you can help them get well. There are still a lot of mysteries regarding cfs/fm. From what many of the leading doctors that treat these illnesses say, there are many causes.

    I do have some strong views on it's pathology, based on my own personal experience in treating my illness over many years and the countless hours I've spent researching it.

    Rate now I am much more focused on treating the disease than finding out what caused it. I personally have been helped tremendously by Isocort (2.5 mg per tab cortisol).

    I take 6 a day which equals about 12 mg hydrocortisone (cortisol is 80% as effective as hydrocortisone). It is helping significantly! I can't help but wonder what 20mg a day hydrocortisone could do for me.

    But, I am content with the isocort for now. Many of us know that inflammation is a big part of cfs/fm. Cortisone in low doses reduces inflammation, helps to balance blood sugar and increases energy. In the reading I have done, low doses actually raise immunity, rather than lower it like large doses do.

    Also, I like to keep my options open. That doesn't mean I jump on every band wagon that comes by. I do like to asses things with an open mind though.

    I try to see things in shades of gray, so to speak. Rather than seeing them as either right or wrong. I'm glad I did that in this case with cortisone, because it is helping a lot. all the best-Jim
    [This Message was Edited on 03/01/2013]