Lipkin's Monster ME/CFS Study: Microbes, Immunity & Big Data
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My story with CFS

Discussion in 'General ME/CFS Discussion' started by Hannahlucia, Jul 28, 2016.

  1. Hannahlucia

    Hannahlucia

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  2. taniaaust1

    taniaaust1

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    Im curious, so basically you are saying you just got well with healthy living, positive thinking (CBT) and GET?

    I wish that worked for all of us. Glad you believe you've found something which works for you.

    Im not going to be negative here but I had a "full" remission at one point for 2-3 years (Dr Cheney has talked about remissions in his ME/CFS patients having those and it not being uncommon), I wasnt having any therapy when that happened. Unfortunately several years later I got a virus, just something going around at the time and ended up back with ME/CFS again and havent since been able to recover again.

    I hope you manage to stay lucky.
     
    Valentijn, Hugo and Hutan like this.
  3. Hutan

    Hutan Senior Member

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    @Hannahlucia, you and your family have certainly been through a very hard time. You have my sympathy. Your symptoms sound like classic ME.

    You didn't list orthostatic intolerance or POTS as a symptom. However your description of your illness (including the coathanger (shoulder and neck) pain, dizziness, lack of balance, pallor, shortness of breath, problems standing in the shower) is highly suggestive of an orthostatic component. I strongly suggest you research orthostatic intolerance - I recommend the POTSUK website as a start.

    Orthostatic intolerance can sometimes be treated and even just understanding it can help you manage it. The lack of oxygen to the brain causes a surge of adrenalin and this can cause what is often labelled 'panic attacks', even though, as you noted, they can occur when you don't have any particular reason to be anxious.

    As you have already experienced, it is very normal for symptoms and the severity of symptoms to change over time. Because of this and because so little is known about the cause of ME - and because there is, as yet no good treatment, it is very easy for those of us with the disease to attribute periods of improvement (and periods of worsening) to all manner of things. We are especially vulnerable to attributing a period of improvement to efforts we ourselves have made to get better, whether it be a specific diet or supplement or positive thinking or whatever. I think that the vast majority of these attributions are incorrect.

    I am concerned that you are promoting Toby's CFS Health Recovery. His programme has been discussed elsewhere in PR and falls in to the category of 'think yourself better - and you will be!!!'.

    I want you to understand that every time someone with ME promotes this kind of treatment, it makes it that much harder for our disease and those of us with the disease to be taken seriously. If all it takes is a bit of positive thinking, a bit of yoga and healthy living to get better, well then, there is no need to waste funds on any proper biomedical research in to the disease, is there?

    You may well be on the road to recovery. I certainly hope so as it is especially dreadful for young people like you to have to endure what you have. But you may yet have a need for the fruits of good scientific research into the disease. And those of us who are still sick certainly desperately need for there to be such research.

    So, please, reconsider your plan to promote CFS Health Recovery. Even just waiting a year or two before you extol the virtues of the program would be a good idea. As you learn more about ME and the politics of the illness, you may change your mind.

    Best wishes.
     
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  4. Skippa

    Skippa Senior Member

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    Wow you got lucky here, well done :thumbsup:

    This kind of intervention makes most of us worse.

    Glad you caught it early on in your life and I hope you don't have a remission.

    My story sadly consists of lots of what you advocate, and they all slowly but surely reduced my quality of life and in many cases caused relapse.

    CBT was useful separating what was unhelpful thoughts and what was physical and gonna knock me down regardless of how I was thinking.
     
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  5. Mij

    Mij Senior Member

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    Hey, I've been ill with M.E for 25 years and I've yet to meet one person who recovered 100% from this illness, let alone several.

    May I ask which doctors you are referring to?
     
  6. Hutan

    Hutan Senior Member

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    To anyone considering the CFS Health Recovery programme, I recommend reading the thread here:
    http://forums.phoenixrising.me/inde...s-cfs-health-centre-in-australia.32067/page-5

    On page 5 is one of Toby's many videos. This one is titled 'TTTTTTT TobyTalks' and subtitled 'Become the best version of yourself'.

    To each their own. But there are consequences for all of us when people suggest that meditation and 'coming from a place of love' and so on will cure ME.
     
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  7. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    Poof! Video's gone.
     
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  8. Hutan

    Hutan Senior Member

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    Oh, that was very fast. I checked before I made that last post that it was still linking through.

    ETA: Ah, sorry you meant @Hannahlucia's video has gone, not TTTTTTT Toby Talks.
    For those who want to check out Toby's video, it is still there, down the bottom of page 5 on the thread linked.
     
    Last edited: Jul 29, 2016
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  9. Hannahlucia

    Hannahlucia

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    Yup because i refuse to associate myself with such a negative "support group"
    I hope you guys mean well but really? Ive been on this website for less than 24 hours and you guys have already made me want to delete my account. Just waiting for a senior member to get back to me.
     
  10. Skippa

    Skippa Senior Member

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    So you get praised, wished well, and then it is constructively pointed out that there are downsides to the treatments you are touting... And you self destruct?

    Hey, the dharma is full of dukkha, we can learn from it all. Toby pointed that out right? Meditation...
     
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  11. Skippa

    Skippa Senior Member

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    @Hannahlucia we wish you well, truly.

    But we've got a numbers game here, and gotta look out for the many other patients that could potentially be harmed by this approach.

    Everything comes with pros and cons. The folks here like to see the potential pitfalls listed alongside the benefits.
     
    Hutan likes this.
  12. Hannahlucia

    Hannahlucia

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    look, it took A LOT for me to put my story out there and this is what has worked for ME.
    You dont just go and tell someone that their approach to healing is incorrect and harmful if it has helped them.
     
  13. Hannahlucia

    Hannahlucia

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    Can someone please kindly tell me how to delete my account? I'd appreciate it.
     
  14. barbc56

    barbc56 Senior Member

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    Yes we mean well but please have a look at the history of me /cfs, the dismissal of our illness as all in our head and the mindset of just think positively and you'll be cured. Your time and effort must have been intense.

    While some of these may make one feel better this also applies to for those who are healthy as well as ill. But they will not be a cure that will last.

    Please realize that asking questions or for more details about your treatment is not necessarily personal criticism but personal opinions.

    Give us a chance and tell us about yourself. There's an introduce yourself thread.

    Welcome to Phoenix Rising!
     
  15. taniaaust1

    taniaaust1

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    I know that post wasnt directed to me at all but I do want to comment on your comment. Try not to allow any negative comments bother you and your own experience of your illness.

    I agree its a real pity cant share their experiences without others feeling like that sharing is a negative one in some way eg could have negative impacts towards what others think of our illness.

    On the hand some of us are very ill, some are even dying due to this illness, some of us have all kinds of "testable" complications of this illness *** this why you may get some negative feedback when posting your story of how you got well with just what it appears you did as it does end up making drs when they read such stories leading to think that the rest of us will improve with just pacing, postive thinking and psychological treatments eg meditation is a psychological treatment.

    It does appear that it was also pacing which helped you, most of us would agree that pacing can be a great help with this illness. It can stop some from getting worst and give others more of a chance to start to heal from this.

    *** for example for testable findings with this.. I have extremely low blood sugar at times with it on tests, I have POTS, I have severe (up to near 200) orthostatic hypertension.. due to this it was I think that I had an issue show up on an eye scan which puts me at risk of sudden blindness, I also get BP drops down to 0...this swinging BP issue to to the ME puts me at risk of heart issues. I also have other abnormalities on tests due to this illness.

    In my case I was actually a yogi before I got ME. My life consisted of meditation THREE times daily, 20mins to 45mins at a time. The things which worked for you, didnt work for me at all (I have lots of CBT in the form of DBT which includes CBT). Being a yogi, I used to hold positive thought patterns etc etc

    Its fear which will cause some to react negatively to your post.. fear that drs and researches who read how you got well by these things will not take our own illness seriously which puts some of our lives at risk. So try to not to get annoyed or bothered at this yourself but rather try to understand where their comments are coming from.

    If you want to hear other peoples stories I will share mine more.

    I was studying natural therapies when I got sick, it was my dream to be a healer. I'd had mono 11 years before and missed a whole term of school due to this but didnt get ME from that but that was a clue that I had something wrong with my immune system. Other clues something was wrong with my immune system before i got sick though I appeared very healthy was vaccinations in my case didnt take and hence i had the hep B vaccine so many times due to this (as far as I know it still didnt take), that vaccine was deemed fairly necessary for those entering the health profession.

    I started to get sick, mine was stressed induced at first.. while working on hard college assignments I'd come down with "a virus", whenever I had to do an exam and was studying hard, I'd come down with "a virus".

    Too many late nights during intense study periods I believed knocked my immune system down some. Doctors over and over diagnosed me has having some virus every time I'd come down with extremely high fever and all the other symptoms. After more then 9 months of this and of getting so many viruses, I knew it just wasnt possible that I had caught another virus, this was the same thing flaring over and over again. At this point I realised myself on research that I had ME/CFS.

    As I was studying at a natural therapy college, I had all kinds of treatments at my disposal from the first time I become ill, well before this went into a full time illness, I had teachers who were chinese medicine practioners, I had teachers who were western herbal medicine practioners, I had teachers who taught homoepathy, over time I sought advice from them all. I also had my yogi teachers and their meditations for relaxation and others for health and visualisation. I also was doing yoga and tai chi at that time. Nothing helped and in fact I just got worst.

    I know now what I did wrong... I should of probably quit my studies, I was leading a way too busy life as a single parent of 2 young children, both with severe medical issues, one of my children is quite disabled due to a gene mutation I have (MTHFR double couple of the worst mutation of it so my child has like spina bifida). I enjoyed my studies though and had a big dreams so I was being like a super woman. I did though spend a week in bed when I needed to do so but as soon as I felt better, right back to college and studies again.

    I should of cut back on the lifestyle I was leading eg paced better. Within a year of pushing myself throu collage I then ended up with this illness full time and found myself bedridden. I was so sick I could of died, I was going comatose for days at a time not waking to drink or eat. My own 9-10 year old child become my carer. I spent most of 9mths in bed, rarely leaving it, my daughter leaving a potty by the bed, it would take me hours to crawl to the toilet otherwise.

    I did recover from that over time, fully recovered to the point I even did a 100km fund raising marathon without ill affects. It was aggressive rest therapy which helped me to get well (resting more then one feels one should, enforcing rest and trying not to use extra energy at all times), .. from the start my body seemed to have some ability to fight whatever this was as it had taken a near year to become a full time illness and would just occur in bouts (possibly some dont have this ability to just recover like my body did?)

    I was well for 2-3 years, went back to a completey normal life before I got sick again (due to catching a just an ordinary thing which was going around) and this time nothing at all helped. Resting would just help me to not get worst but didnt help me actually improve on my base line.

    I started to get emotional issues with the ME/CFS to the point I then ended up getting a wrong diagnoses of having a personality disorder. It turned out thou to be food issues causing my mood swings, I had big issues with hyperinsulinemia and carbohydrates.

    Other of my mood issues was caused by hormonal abnormalities I have (exessive estrogen and I react negatively to that.. I have PCOS and PMDD), it wasnt any negative thinking going on causing my mood issues but rather my bodies reactions to things and the hormonal issues.

    I also had issues with hypogycemia (with blood readings at such a low level they were almost low enough to cause some to go unconscious).

    I also developed POTS, severe hypotension, severe hypertension, MCS, (Id had FM on the first bout of this illness but it didnt come back the second time), had the worst rombergs test result the hospital neurologist had ever seen, had such abnormal blood lab results coming back that the labs kept on thinking they were mistakes. I get very high adrenaline due to the hyperadrenalic POTS i have (and relaxation doesnt help this at all!! Its postural so its the positioning which helps but once Im high on this it doesnt come down like normal persons does even when Im completely non stressed).

    I developed abnormal EEGs (where they measure brain waves) and at this point realised that is why I'd became unable to meditate any more.. I'd stopped being able to do my yogi meditations and it was all to do with my brain becoming abnormal. When I shut my eyes and meditate, my brain patterns do not slow down now like a normal persons even though I have YEARS of experience in meditation. (hence why I dont believe meditation can work for all of us). At sleep too my brain would be abnormal.

    Where I am today.. well Im still declining. I cant pace the way I need to pace. Not cause I dont know how as I know how to pace well but more so just to live Im exceding my daily limits. I now require home support, I do get some but it just isnt enough for me to be able to pace as I need to pace. I can no longer get to medical appointments as Im homebound so all the problems, some serious that Ive developed with the ME cant even be managed.

    I end up in hospital a lot needing a drip and have to be ambulanced there after collapses due to low blood volume due to the POTS which is due to the ME/CFS. It takes two people now to take me shopping as I need to be pushed in a wheelchair and I can collapse from this and go into like shock (and need ambulance and drip) if I get a bad chemical exposure.

    Im at huge risk as I cant care for myself (I leave my pots on all night due to my memory issues etc etc), Im stuggling just to feed my cat, a cat I keep so I dont get as lonely as I cant leave my house alone as I can just collapse.

    that's my story.
     
    Last edited: Jul 29, 2016
  16. taniaaust1

    taniaaust1

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    sorry I dont think peoples accounts can be completely deleted as that would delete all their posts and others have commented.

    I hope you do stick around.
     
  17. Hutan

    Hutan Senior Member

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    @Hannahlucia
    I'm truly sorry my comment upset you. @taniaaust1 is correct that the part of my comment about 'lifestyle changes as cures' was motivated by fear. Fear that people do not take our illness seriously when they hear it can be cured by the sorts of treatments sold by the likes of CFS Health Recovery and that biomedical treatments will be delayed as a result. This fear is based in reality; people's physical and mental wellbeing has been greatly harmed by others thinking that exercise and positive thinking will cure them.

    My son just turned 17 a couple of days ago and he got ME when he was 13. Although he is mostly house-bound, he rarely tells anyone he is ill as he knows that most people will think that if only he just tried a bit harder to be up and about he could get well.

    Perhaps your treatments have helped you; certainly pacing is a good tool. However, it is valid to point out that your current improvement could just be the natural progression of your illness. Both I and my two children's ME symptoms were worst in the first two years and have improved since. I've seen a number of people on PR and I myself have enthusiastically attributed improvements to a particular treatment early on, only to find that, in time and often quite a short time, the improvements faded.

    Watching your video, I was struck by the great fear you had had about your future when you had the diagnosis of CFS - you mentioned you envisioned ending up in a wheelchair. It seemed to me that the CFS Health Recovery programme has given you hope. And so perhaps that is why you have reacted so strongly to the suggestion that the programme is unlikely to be a cure.

    There are many other places where hope can find root. My daughter essentially recovered after two years with the illness. I first got ME when I was 10. I was sick for a year and then recovered and had some 35 healthy years before becoming ill again. Some people do improve markedly/go into remission/are cured - often through doing nothing in particular.

    Even if you don't improve much beyond where you are now, you certainly won't necessarily end up in a wheelchair. And, even if you do, you can still find ways to live a good life, as a number of regulars on PR do.

    I and my son place our hope in research. There is lots of good research being done now. There is increasing recognition that ME has a biological basis and that research can find out what that is. These are exciting times and PR has lots of good information about what is happening.

    Like the others, I do hope you will stick around. I really like @barbc56's quote at the end of her posts:
    Where there is much desire to learn, there of necessity will be much arguing, much writing, many opinions; for opinions in good men is but knowledge in the making.
    JOHN MILTON
     
    Last edited: Jul 29, 2016
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  18. Valentijn

    Valentijn The Diabolic Logic

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    It's not negativity, just an acceptance of our reality living with ME :)

    Because you deleted your first post, I don't know what the exact contents were. But most research and all patient surveys show that the very large majority of patients are not helped by cognitive or exercise therapies, and most have found exercise therapies to be harmful.

    There are also some physiological abnormalities repeatedly found in the published research of ME patients which are not consistent with an illness induced or cured by cognitive or behavioral changes. This is a good place to discuss those if you're interested in learning more.
     
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  19. Woolie

    Woolie Senior Member

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    Recently recovered folks, I understand that you want to do good by sharing your secrets. But if you do, you have to listen as well as speak. This is not a blog, its a conversation.

    After 25+ years of trying all sorts of stuff, and still being ill, I'm really tired of being told by the lucky ones that I'm "negative". That's just not okay, sorry. Listen to what we have to say and try to understand without judgement.
     
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