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Has anyone been completely cured of CFS?

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

  1. ruben

    ruben

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    I suppose you'd have to say that the responses to this thread paint a pretty bleak picture. Reading the messages doesn't give anyone the slightest idea of which root to go down. There is no recurring theme. Every 6 months here in the UK I visit my local ME/CFS clinic. I have done this for the last 3 or 4 years. There isn't much point in doing this really but I like to know if she has had any useful feedback from other sufferers. You don't see an ME/CFS doctor at these appointments, you see an occupational therapist!! She says she doesn't know what to say really,'' the only thing I have to offer is CBT/GET she says''. I think far too much time is wasted on here discussing CBT/GET. Surely if there was any real use in this approach then sufferers would be strongly urged and advised to give it a go. I think we can deduce from the way my therapist mentions it that it's pretty useless. To me, in the UK, it's probably just an attempt to get people off benefits and back into work. They can't pin this one on me though as I do have a fulltime job. Which brings me to what I touched on in my original post, about techniques such as Gupta training, Mickel therapy and the Lightning process. The problem being though that these seem to be a bit taboo.But these seem to be the only areas where the word ''cure'' keeps appearing. For what it's worth suggesting I would like to see this happen. It was reported on here not so long back that at Newcastle University they had discovered an abnormaliity in our muscle cells. This would seem quite significant I'd have thought. Why not do a trial whereby get a group of people all who have classic ME/CFS symptoms and then confirm they have these muscle cell abnormalities. They then all learn the techniques of either say Gupta, Mickel therapy or the lightning process. All learning the same one of course. If some of the the stories scattered around the internet are true then some of these people should be cured. Then they could have a retest to see if their muscle cells were the same or had changed. I look forward to everyones opinions
  2. peggy-sue

    peggy-sue

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    I don't know about gupta - but mickel and lightening are just variations of psychological "therapies" - hence the interest in them by the official authorities which prescribe to the "biopsychosocial model" in the uk.
    They are not cures for ME. They are (IMNSHO) pseudoscientific, money-grubbing leeches, preying on the hope of very sick people.

    They might help mild depression though.
  3. brenda

    brenda Senior Member

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    I have come across a few, some have been on here but they soon get told that they never had ME in the first place. The ones I have heard of all have a drastic change of diet, some of them go raw vegan. I am doing macrobiotics and am healing.

    One pattern which is common with Lyme Disease, is to become very ill at first, then to improve over time even to a state where one thinks that one is better, then a return of it but much more severe. Its the way the immune system is messed about.
    dannybex and Allyson like this.
  4. ukxmrv

    ukxmrv Senior Member

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    I don't think that you are saying anything new here, Reuban. When the Gupta/LP/Mickel people come on the groups claiming to be cured or I meet one in person I always ask what physical abnormalities they had and which tests. Other PWME do the same thing.

    We know that CBT/GET don't work and even make people worse because we have the surveys done by the charities and the FINE & PACE trials both failed.

    The people who do Gupta/Mickel/LP are not the people who pay for the private tests or see the doctors using leading edge techniques. They could do the tests before and after. The people selling the snake oil could pay for tests but they chose not to do so. They could do immune system tests that show abnormalities of things like NK cells.

    I've seen the same things sold over and over as cures (with a different name) for nearly 30 years.

    We have one of these pretend cured people in my extended family and even her own mother admits that she is still the same as before.

    I'd not want to see precious and scarce research funds paid to test these dubious and implausible methods above, I'd rather see the money spent on things that patients who do have testing and do have doctors interested in finding a marker are using to treat their patients - things like Ampligin, Rituximab, Valtrex etc.
    beaker, jimells, taniaaust1 and 3 others like this.
  5. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    This link may interest some http://www.masscfids.org/videofiles/BellApril2011/Bell.html

    This is Dr Bell's 25 year follow up on cfs patients he has seen. There was a small percentage that recovered but from memory the recovery took place with 5 years those with cfs longer then 5 years didnt seem to recover. A certain percentage got alot worse most most were probably functioning the same but many of these people stated they were now normal or recovered but when investigated further they found they were far from normal. Most still had sleep issues, daily headaches etc but this became the normal for them as well as developing better coping skills which at first glance appeared that they had recovered.

    I think its safe to say that if u could put a non cfs/me person with good health into the body of one of these so called recovered but well adapted coping skills that many people would be shocked at the level of disability they still have. After awhile we dont know what normal feels like. To us waking up several times a night and starting the day with a headache is normal for us. I also think the first few years of this illness there is alot more suffering but in a different way, firstly we dont know whats going on. The our lives are turned upside down and we try to push through things and crash, so we going through this many times until we learn to pace our selves and rest more and avoid certain activitites. Then we also go through a depression or mourning phase where we realise we have lost our previous life and these bouts return every so often as well. So unless one is in the bedridden, cant stand for more then a few minutes or do anything for more then a few minutes except lie in bed, then we natural adapt our lives and things do improve to a point as we longer exacerbate ourselves by pushing ourselves or feeling hopeless and depressed.

    Now im not saying certain treatments dont improve our condition, far from it but they can increase our boundaries of tolerance to activities, less symptoms at rest and we accept a lower level of function then a normal healthy person. Now i have improved from a 3 out of 10 to a 8 but of late more a 7 which is good improvement, but i reckon if we shoved a healthy person in my body they would freak out and be going backwards and forwards to the doctors trying to find out whats going on, get a depression diagnosis and realise many docs cant help. I think some hippy who is anti meds in my sleeping shoes would be brought to his knees within a few days.

    So to sum up, a small percentage get better within the first few years, another small percentage get alot worse to the point of being bedridden and the rest of us float around in misery or using good coping skills and or mainly functioning on symptomatic treatments, and hoping that the next time we log onto PR that there is a diagnostic test and a cure.

    cheers!!!
    beaker, jimells, MeSci and 5 others like this.
  6. alex3619

    alex3619 Senior Member

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    heapsreal , do you have that cure yet? [Private joke, now not so private.]
  7. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    We will have to ask Gary for it again, cause i cant find it, hehehe
  8. dannybex

    dannybex Senior Member

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    I agree with Brenda. Many people have recovered, but when that's said, then they're usually attacked or accused of not having had "real" ME/CFS. I know a half dozen from our local support group (some who were severely ill, one who was housebound for 7 years, bedridden for 2, ill for 16, but has been well now for the last six years. One did relapse briefly (Ken Lassesen), but he recovered in about 8 months and is back at work full time and full of energy.

    It's up to you to believe it or not, but people do recover.
    Lillybelle, Aerose91, jimmy86 and 8 others like this.
  9. ruben

    ruben

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    I apologise if I've not said anything new. If I'm feeling about a 7 or 8 out of 10 I don't tend to visit this site that often. With regard to leading edge tests, where can you get them and how much do they cost. Also, is it possible to have private tests which lead to some kind of precise diagnosis and the condition is one which could say be treated on the NHS. Does this ever happen
    ukxmrv likes this.
  10. peggy-sue

    peggy-sue

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    Ruben said;
    "Also, is it possible to have private tests which lead to some kind of precise diagnosis and the condition is one which could say be treated on the NHS. Does this ever happen"

    I'm afraid the answer is no.
    Firestormm likes this.
  11. Firestormm

    Firestormm Senior Member

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    It is exceedingly difficult at this stage - and for the entire history of this/these illnesses - to define them let alone test for them effectively.

    Those who do offer specific tests are often testing for a particular 'thing' and comparing a result to a range of what is considered 'normal' and looking for abnormalities.

    Then you have the tests themselves to consider - are they effective? can they actually do what is promised?

    Then the ranges used to compare them to - are these the ranges used throughout medicine? by the NHS? or something concocted like a test based on some individuals theory of what they should be?

    Do the results actually indicate disease? Is that abnormality likely to account for the symptom or health deterioration being presented?

    It is for the patient (and doctor) exceptionally hard to negotiate a way through this minefield. And no. I would say it is not possible to have a 'precise' anything.

    If you present with symptoms that leads your doctor to recommend a test and this reveals something - you might get a specific treatment for it; but even then the treatment offered may not improve things or resolve the problem.

    Asking if someone has ever recovered from something that is currently only defined based on reported symptoms (which may vary or indeed may only be part of a person's overall health problems) is also impossible to answer.

    People may and do feel better enough to 'return' to some more meaningful societal engagement. I too have experienced periods - sometimes prolonged - of what I would term 'remission'. The why? and how? are impossible for me to try and explain: I have no explanation.

    Of course with hindsight and as I am where I am now, I am less likely to view those periods as ones of 'recovery'. It's all subjective. But during those times my disability did not disappear. It was still a hard struggle but I was better engaged within society - working or studying.

    But if a person comes back to a forum such as this and is willing to share their thoughts about how they think they managed to 'recover' - and what they found useful - I wouldn't slam them because I didn't believe they could have possibly shared 'my' disease.

    A person who has spent a lot of money obtaining test results that they believe in and in which they think proves they have 'ME' should really be as open to questions as the person who has 'recovered'. And as open as we all need to try and be.

    We are all different but we all have this cluster of symptoms in common and share this diagnosis as a result. Any more than that - at this point - is still speculation.

    I think things in medicine and in science are moving forward and picking up pace. I also think that we in this melting pot of ME or CFS are likely to find that we become separated into smaller and better defined - treatable - ones.

    But that's progress all the same :)
    Sparrowhawk, MeSci, Tammy and 2 others like this.
  12. peggy-sue

    peggy-sue

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    ok, so you are wearing a functioning brain today, Firestormm :p ;)
    I'm not, so thanks for expanding and explaining things so much better than I could even imagine doing atm! :love:
    Firestormm likes this.
  13. Waverunner

    Waverunner Senior Member

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    There are a few reasons why things are so messed up with CFS but the biggest problem in my eyes is the lack of diagnostics. There are thousands of possibilities where things can go wrong in the human body. From infections, to autoimmune disease, to genetic defects, to toxins, to the microbiome etc.. Now the medical problem is, that we are not willing and/or not able to test for these things.

    So if we look at a patient population of CFS it likely is highly heterogeneous. And even if we look at two patients who suffer from the same infection, they both have a different genetic makeup which can influence the outcome or the treatment success tremendously. In conclusion we can say, that we don't know the reason for CFS in each patient. In the worst case, 10 PWCs suffer from 10 different diseases but all are labeled CFS. This is a gigantic problem because as long as you are not able to differentiate between these patients, you won't be able to conduct reliable studies. What would be the results if you study a patient group that consists of one person with diabetes, one with cancer, one with HIV and one with IBD and try to find a common cause or a working treatment? The study would be a complete mess because the cancer patient doesn't need insulin and the IBD patient doesn't need chemotherapy.

    A better way would be to take 1,000 CFS patients and run all kinds of tests of them. After you did this, you cluster the patients into groups, according to similar diagnostic markers (e.g. one group that seems to have an active herpes virus infection). Then you start specific treatments for each cluster and see if it works.

    What we do at the moment is, we conduct research studies on 10 to 30 patients with CFS. We find all kinds of abnormalities but we have no cause. We then conclude that more research is needed and that's it. This explains why we still have not one single treatment and not one single reliable test for CFS, although this illness exists for countless decades now. As long as this doesn't change, it will be the same for the next decades as well.
  14. Firestormm

    Firestormm Senior Member

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    Maybe not as I didn't realise I had replied to you :love: :)

    Waverunner I shall come back and read you comment more deservedly. I think it better to refer to clinical heterogeneity. We may also see through the application of particular treatments for example subgroups that have things biologically in common. Which is something else to consider: the application of treatments may reveal these common things more quickly - e.g. Rituximab - than traditional approaches could. Though I still favour discovering the 'why' with a drug before embarking on large scale and expensive trials. Rambling... sorry :)
  15. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I wasn't tested for coeliac disease before getting my diagnosis in 1999. I asked for a test last year, but had already gone gluten-free and wasn't prepared to undo the improvements I had seen just to confirm whether I had it or not! (I did have the blood test, which was unsurprisingly negative.)
  16. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Makes me grateful for the NHS then (which is not very often)!
  17. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I am open to the possibility of people having recovered. On another forum I asked people if they knew of any such cases, and a few reported apparent complete or near-complete recovery in friends or relatives but the details were a bit vague. I made a file of them but am logging off now. I can check it out tomorrow.

    What I am 99% closed to is believing that people with true ME/CFS (whatever that is, but I think we here have a general consensus) have been cured by any psychoquackery.

    I too have observed what sometimes seems like a reflex aggressive reaction (not here as far as I recall) to reports of recovery, and those who suggest that it is worth keeping an open mind and looking into the reports can be similarly attacked. Maybe it's due to so many dashed hopes, and ruined lives.
  18. Waverunner

    Waverunner Senior Member

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    I agree. When finding the cause of an illness is not possible, because we lack the diagnostic and financial means to understand what is happening on the molecular level, your only chance is to take into account what we do know and gamble with it. If you have an unknown illness, your only rational treatment approach is to try all kinds of different treatment approaches, till you found one that works. If it works, you can narrow down the cause e.g. if an antibiotic improves your condition, it is likely that you suffered from a bacterial infection. The huge problem I see with CFS is, that you don't have many choices. There are only a few antiviral drugs on the markets but we have so many different viruses. So if CFS is caused by a virus, you can't try many drugs and most of them are not very effective at all. The next problem is, that we lack trials, so how are we going to find out if something works or not?

    I don't want to be a pessimist but in my eyes CFS is a mess. We lack funding, we lack drugs, we lack trials, we lack attention, we lack knowledge etc.. I don't see any light at the end of the tunnel.

    This is my absolute personal believe but I think, that the access to cheap whole genome sequencing, as well as effective gene therapy, that can be done with the tools of a little backyard lab in the future, will do more for the cure of CFS, than any pharma company or government combined. If developing a treatment takes 10-15 years and costs around 1 billion dollars you can forget an approved, specific CFS treatment anytime soon.
    beaker, overtrain and heapsreal like this.
  19. Valentijn

    Valentijn Activity Level: 3

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    I think those reports often contain some element of either exploitation (pay the big $$$ to get the magic cure), complete misunderstanding of the disease (it's just a digestive problem, or a hormone problem), denial of symptoms (I'm recovered, I just get the flu a lot and can't do as much because I'm a bit older now), or blaming the victim (just change how you think/act and it goes away).

    I think there are some that recover, or at least improve substantially, but there doesn't seem to be a consistent method of recovery that works for anyone else. Many seem to spontaneously get better, and some improve due to having symptoms and co-infections treated.

    If someone new popped on with the "cure" I'd have little trust in it. If someone that's been part of this community for years found something that made a significant improvement, I'd find that much more credible.
    peggy-sue likes this.
  20. ukxmrv

    ukxmrv Senior Member

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    No apology needed, Ruben. Very kind of you to reply in that way.

    My experience was that the NHS and the private test/treatment options are in different streams.

    My private CFS doctor did try to engage both my GP and various NHS docs that I saw. He wrote letters and gave me my test results. However, they refused to prescribe the treatments that he suggested and they said that they did not accept the tests. A NHS Immunologist, as an example did not understand a report on NK testing and did not think it relevant anyway.

    There are a few exceptions to this. It's a postcode lottery. As an example of heard of patients who have seen Dr Myhill and their GP then writes a prescription for B12 injections based on her recommendations. I've also heard of an Immunologist who has prescribed private antiviral drugs for a patient who paid for tests. She runs a NHS clinic but will only do this if one pays to see her privately. There will be lots of other cases too.

    It wasn't always like this. In the late 80's and early 90's there were NHS doctors who were happy to prescribe experimental drugs for ME patients. Something changed in the NHS and the NICE guideline was a final nail in the coffin for me getting NHS drugs.

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