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Has anyone been completely cured of CFS?

Discussion in 'General ME/CFS Discussion' started by cosmo, Jul 19, 2013.

  1. Erik Johnson

    Erik Johnson Senior Member

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    Dr Ramsay didn't say ME was viral.
    He said that ME differs from post viral fatigue states in this regard.

    CFS is a syndrome "research tool" that is used when a doctor has gone through the criteria and excluded known causes of fatigue, and other conditions which might be treated.

    The Holmes definition itself explains what the syndrome is for.
    -------------------------------------------------
    This definition is intentionally restrictive, to maximize the chances that research studies will detect significant associations if such associations truly exist. It identifies persons whose illnesses are most compatible with a possibly unique clinical entity; persons who may have less severe forms of the syndrome or who have less characteristic clinical features may be excluded by the new definition.
    The chronic fatigue syndrome is currently an operational concept designed for research purposes that physicians must recognize not necessarily as a single disease but as a syndrome - a complex of potentially related symptoms that tend to occur together - that may have several causes. Periodic reconsideration of conditions such as those listed under major criteria, part 2, should be standard practice in the long-term follow-up of these patients.
     
    aimossy likes this.
  2. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    So do you think that 'chronically relapsing' means incurable, as you implied here:

    I'm not clear on the distinction between a chronic disease and a chronically relapsing disease.
     
  3. xks201

    xks201 Senior Member

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    haha...I was basically making fun at the oxymoron that is describing ME as a chronically relapsing disease that is incurable. If it is chronically relapsing to the point where doctors can't cure it then I guess temporarily it is incurable. The problem is still that it is a set of symptoms, not a disease. The two are different.

    Don't get too caught up in this...

    A chronic disease implies a disease that consistently occurs. A chronically relapsing disease implies a disease that has periods of temporary remission. Understand?

    I find it funny how the people calling it incurable are the people who haven't been cured. Those are the people that are defending the definition of this as incurable. And it is no surprise they aren't cured- because for one they don't even believe there is a cure. lol

    When you look at all of the things that can go wrong and cause a set of symptoms like hormones, genes, metabolism, nutrition, drug interactions, physical injuries, mental disorders, chemical toxin poisoning - all of which can produce chronic fatigue - it should give a bigger perspective or understanding for the idea that CFS does not have one cause...

    And whoever says it has one cause doesn't understand the body.
     
    barbican1 and aimossy like this.
  4. rosie26

    rosie26 Senior Member

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    xks201

    May I ask if you experienced PEM when you were ill ? And are you still ill ?
     
  5. ukxmrv

    ukxmrv Senior Member

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    It was Dr Ramsay and his medical colleagues, the people who defined ME and studied the epidemics who describe it in the way you ridiculed. They also said a lot more which you didn't bother to read or research.

    You either didn't bother to read the follow up that Dr Bell's followup on his long term pateints

    It's not funny to "make fun" at a chronic disease.

    Then you had a dig at "people calling it incurable who haven't been cured"? That's an attack on sick patients like myself who may have this disease until we die. Also patients like Sophia, Lynne or Annabel in the UK who have already died. To my own friends who died of cancer or a heart attack at a young age after suffering from ME for decades.

    Once again, not even remotely funny. (lol indeed?)

    For the first 10 years I never imaged that I wouldn't get better. Didn't cure me.
     
    taniaaust1, Sidereal, beaker and 7 others like this.
  6. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    cfs is an illness of exclusion so theoretically when they find something abnormal u know longer have cfs, this is how the government can avoid putting money into research etc etc

    ME isnt a illness of exclusion although certain illnesses are excluded just like any other illness.

    CFS/ME that most of us here talk about and refer to is the illness with the long list of symptoms we all know as well as infectious/immunological abnormalities of low nk and cd8 t cell function, t cell dysfunction, viral and bacterial reactivations. PEM found in the 2 day exercise testing. Plus many others that could also be listed.

    So the cfs/me we refer to does have a very low cure rate, as in 100%, many improve with treatment and have to continue this treatment to maintain this improvement. It is commonly known that if a 100% cure is to occurr that it has to happen within the first 5 years and is more common also in children to recover. The cure rate of adults who have had cfs/me for longer then 5 years is very low, ie 100% cure rate with no need for ongoing treatment.

    Many of us are skeptical people have had cfs/me if they have been 100% cured of this illness if they have had it for >5yrs and are adults. The issue is that it is very hard to be certain that those who have been cured of this illness truly have had cfs/me, no one is doubting they were very sick but we are doubting the diagnosis as a 100% diagnosis of cfs/me with the abnormalities mentioned above as not many doctors would have tested these patients thoroughly enough or have access to the correct testing.

    If one has seen any info who watched videos of dr peterson who would be one of the few doctors who could actually diagnose cfs/me accurately with all the above testing mentioned, they would know that of the thousands of patients he has seen with cfs/me that very few recover 100% without any ongoing treatment for this illness.

    So it is very understandable that we would be skeptical of someone being 100% cured of cfs/me or else dr peterson and other docs who have been in this game along time would have mentioned that they have seen a substantial amount of cures.

    Just to repeat myself cfs and ME that we mention here arent illnesses of exclusion but illnesses with neurological symptoms, chronic infections and immune dysfunction, not someone who just has fatigue or is burnt out or has hypogonodal symptoms, or just hypothyroid or just adrenal dysfunction. cfs/me has multiple dysfunctions going on that requires a multitude of treatments to try and get the upper hand and isnt an illness that will be cured by a single change in diet or single medication etc.

    cheers!!!
     
  7. xks201

    xks201 Senior Member

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    Listen buddy I was bed ridden for basically what should have been the best part of my life. I take medications that if dosed ten micrograms off I relapse and my day and sometimes week is shot. So if you want to claim im insulting people because they dont do full hormone and nutrition blood panels then think what you want. If you think some doctor gave me miracle advice or a pill to fix it all you are wrong. Ive had to fight for every bit of success ive had with this and very few of my medical tests even revealed obvious results. I almost died more than several times in the ER and even planned my own funeral so my mother wouldnt have to when I was 18. The difference between me and the people who havent gotten results is that ive gone into nearly hundred thousand dollars in debt trying new things and running tests and seeing many doctors. I dont just throw my hands in the air and claim my disease is incurable. You already know where that mentality gets you.
    Heaps not everyone with cfs has all of the symptoms you mentioned. Of course the hormone and immune system signal and control each other. If you have low cortisol for example your immume system will be compromised. Thats nothing new and thus that doesnt just pertain to what you are trying to single out as one disease pattern causing one set of symptoms. Me personally-im not going to listen to a doc who says there is no cure. I might as well stay home and count my days if thats the case but its not.
     
    barbican1 likes this.
  8. Mij

    Mij Senior Member

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    When I first became ill I "recovered" after 8 months, or at least I thought iI did from a viral infection. I felt 95% better but I noticed I couldn't run, cycle etc like I used to, I had odd muscle functioning but I was functional as long as I wasn't on my feet all day. I went back to work and over the course of 3 weeks my equilibrium was getting worse, my gait was off and I stared feeling weaker. After 3 weeks of working I quit because I could no longer stand upright.or walk. My doctor thought I had MS. So 5.5yrs later I started improving again and I reached a level of around 80% as long as I got adequate rest, some days I felt only 50% but I always bounced back to 80% eventually. I took immune modulators and had a complete relapse and I have never regained my base line 13yrs later.

    So yeah it's been relapsing type of illness for me.

    I've read that if we were to have some form of "recovery" it should happen within the first 5-6yrs. I wouldn't call it recovery for myself because all I had to do was get "back into normal life" and that was the end of my so called recovery.
     
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  9. Mij

    Mij Senior Member

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    Oh and I should add that I didn't do any treatments to feel better either. I didn't take one vitamin.
     
    merylg likes this.
  10. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I dont think anyone is saying you werent ill. Im generalising here but a cfs/me diagnosis is questionable if one has made a 100% recovery.

    Half your luck if u have hundreds of thousands of dollars to throw at this illness but most of us dont have that.
    I also dont think any one has thrown their hands up in the air and given up or else this site wouldnt exist and people wouldnt post about treatments they are trying.

    I think most people are being realistic, most of us have a desire in the back of our heads to be 100% but many of us are taking one step at a time and happy with improvements.

    I get the feeling that because u have improved or cured that you are saying the rest of us are lazy or given up and just wine about being ill. We dont even know if we all have the same illness. What u have done to improve yourself may not help another.

    As u have mentioned before, fatigue is a symptom that many other illnesses have. chronic fatigue syndrome is a bullshit diagnosis thats aimed at putting multiple illness together as a bunch of psycho's and is very different to what most of us know as chronic fatigue syndrome with infectious/immune dysfunctions.
     
  11. Erik Johnson

    Erik Johnson Senior Member

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    If you read Osler's Web, perhaps you recall that the other doctors at Tahoe tried to drive Cheney and Peterson out of town. They said there was no such thing as CFS, that this was just depression, stress and poor lifestyle habits.
    Their patients bailed out and transferred their records to Cheney and Peterson's office.

    Soon, these doctors played a funny trick. They suddenly became "believers" in CFS and claimed they had effective treatments for it.
    They managed to drag things out for several appointments before patients were able to figure out that these treatments were aimed at depression, stress and poor lifestyle habits.
    There were always more of these types of doctors than good ones, so they created a climate where the prevailing CFS diagnosis was a BS diagnosis.
     
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  12. ask2266

    ask2266

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    I have been in complete remission since 2010. I only have viral infections (EBV, HHV6 & Parvo), and I got in remission by taking Valcyte for 10 months (after having been on Valtrex and Famvir for a few years).

    Last year, I started exercising and got where I could run 10 miles. When I reached 10 miles, I had a brief CFIDS flare for 2 weeks that then subsided when I quit running. I got bloodwork back during that flare that showed my EBV was through the roof. I also developed dysautonomia from exercising.

    Since then, I have been trying to get my viral levels down by taking monolaurin and using an earthing sheet (which thins the blood). I have had some die-off from using these, so I think I am on the right track to keep CFIDS from coming back. Also, the earthing sheet got rid of the dysautonomia, which was a pleasant and unexpected side-effect. I posted about it under the Autonomic symptoms board on here.
     
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  13. ask2266

    ask2266

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    I will add that Dr. Martin Lerner believes you can get people in full remission, but he would say that the ones who get in remission are usually those with only viral infections and NOT bacterial infections. For some reason, the immune system can't seem to rebound against the bacterial stuff as well.
     
  14. Erik Johnson

    Erik Johnson Senior Member

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    It's interesting that in 1985, Dr Carol Jessop in San Francisco treated her "mystery illness" patients with an antifungal, Ketoconazole... Dr Bell treated his Lyndonville cluster with Bicillin, an antibiotic... and Cheney/Peterson treated the Incline Village cohort with IV Acyclovir.

    All three achieved spectacular remissions, and all three had subsequent relapse.
     
    GracieJ likes this.
  15. ask2266

    ask2266

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    I do believe that even if you get it in remission, you have to be vigilant to prevent relapse, because the pathogens are still there, your crappy immune system is still there, your poorly functioning adrenal glands are still there, and your body has some muscle/neurological memory of the down-regulated energy state that is CFIDS. So I may be surviving on borrowed time, but I am hopeful that earthing and monolaurin are going to keep me on this side of the cliff.
     
  16. Mij

    Mij Senior Member

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    Congrats on feeling better! How long were you ill?
     
  17. ask2266

    ask2266

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    I developed CFIDS in June 2006, so I was sick for 3 years before I started taking Valcyte in 2009. I took Valtrex and Famvir from 2007 until 2009, before that. Overall, I had active CFIDS for 4 years.
     
    Sparrowhawk likes this.
  18. dannybex

    dannybex Senior Member

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    xks201 I'm curious if you ever tried to look into what may have caused or contributed to the panhypopituitarism? Like pesticide, fungicide, or other chemical exposures, heavy metals, mold, infections, etc?

    Thanks in advance.
     
  19. cosmo

    cosmo

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    Hello, wow, there are so many responses on here!!

    I haven't been on in a long time so I will wade through all of these.
    Thanks to everyone who is contributing to this discussion, great thoughts all.
     
  20. Snow Leopard

    Snow Leopard Senior Member

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    I am highly skeptical of whether those who have claimed to recover as a result of LP has really recovered a all, or was already experiencing a spontaneous remission.

    Some patients are more suggestive than others, some may have psychiatric issues on top of CFS, but I don't like it when people assume that people who claim recovery from CFS after psychiatric treatment necessarily had a psychiatric illness. It is okay to be skeptical of their claims, but it is not right to form any sort of conclusion. In reality we are still ignorant of both their underlying disease and whether they are truly recovered and whether there was any sort of cause and effect from the treatment. This is why double blinded trials with objective measures are so important in medical science. It is the only clear way to start to unwrap the many factors involved.
     
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