The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Am I really getting better?

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by AdamS, Jun 4, 2017.

  1. AdamS

    AdamS Senior Member

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    The logical part of me knows that ME is an extremely complex disease that has little to no hope for recovery currently. Having read hundreds of papers, articles and accounts i'm extremely doubtful that I will ever get better, however...

    Recently my friends/family have said that I seem to be making improvements. I haven't had PEM or crashed/relapsed significantly in the past 2 ish months, I also managed to do the following in in the past few weeks:

    - Play 9 holes of golf.
    - Go to London for 2 busy days of meetings.
    - Go on a few nights out where I drank lots and got in at 3-4am ish.
    - Go for a few meals/to a few social events.

    This all sounds awesome, but it wasn't simple. I had to be extremely careful, getting a lot of taxis in London, chugging high sugar electrolyte drinks between each hole while playing golf etc...the nights out I can't explain, I do well on alcohol for some reason (high sugar, vasodilator, b-cell suppressor, acetate fueling the brain, who knows)?

    In relative terms it is still a HUGE reduction in activity for my age. I still can't work because any intense mental exertion which involves learning/processing new information seems to leave me exhausted...writing new threads like this one makes my brain hurt a bit. I also can't go to the gym unless I just do light stretching. I don't do much through the day other than rest, listen to music, go for short walks and try to keep my mind occupied.

    My onset was relatively gradual until November 2016 when I had a major relapse at the gym leaving me unable to work.

    I have a feeling this illness for me is mainly linked to sugar/glucose metabolism and circulation (I also have POTS).

    Any input is greatly appreciated.
     
    Last edited: Jun 4, 2017
  2. taniaaust1

    taniaaust1 Senior Member

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    the fact u do well on alcohol is a little strange for a ME Patient. At one point alcohol intollerance was almost made part of the diagnostic criteria as it is so common in us.

    If you've had ME/CFS for less then 3-4 years, I dont think u should think that there is no hope for recovery as remissions are not uncommon in ME/CFS and even dr cheney spoke of seeing these in his patients. Many of us at PR have had a remission

    Dr Sarah Myhill I think recommends low carb diet to her ME/CFS patients.. so if you find sugar helps u. .once again u seem to be diferent to many with this.
     
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  3. rebar

    rebar Senior Member

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    I afraid I completely disagree with Tanlaaust, alcohol helps some, there are post about this here on PR. If you have or have had PEM, and also pots then there aren't many illnesses that share those two symptoms and certainly when you add in your other symptoms. I celebrate in your improvement, but please manage your energy and don't push the limits, less now is truly more.
     
  4. Binkie4

    Binkie4 Senior Member

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    Last edited: Jun 4, 2017
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  5. ryan31337

    ryan31337 Senior Member

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    Hi @AdamS,

    I don't think what you describe is that unusual - our perception is probably shaped by only seeing patients on here when they are in a more moderate/severe phase, or are the unlucky ones that do not get any respite from the illness.

    There's many of us, myself included, that have had prolonged periods (years) of remission and near recovery. Twice I got to a state where my baseline was high enough that I could work a single full day or do relatively demanding exercise, the problem was I could not maintain that level of exertion and if I tried two or more days in a row I would crash again. Even so it was not the end of the world, I would get through the crash PEM and regain previous high baselines with a few days rest.

    You're in the hardest part of the illness now, having the temptation and ability to overreach with a return to near normality. All I can recommend is very structured daily planning, with frequent horizontal exercise to benefit your POTS... but of course it must be appropriate, i.e. it should never give you PEM or make you feel worse.

    Its easy to start planning pre and post rest day buffers to get you through over exertion but ultimately this should be avoided. You're not going to do yourself any favours in the long run - physically or mentally, as it'll twist your and other's expectations of what you can and can't do.

    Keep up the good work and enjoy the progress :thumbsup:

    Ryan
     
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  6. AdamS

    AdamS Senior Member

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    @ryan31337 Thanks mate, really helpful and sensible advice!
     
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  7. Snow Leopard

    Snow Leopard Hibernating

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    Sounds pretty good from where I'm sitting.

    It sounds like you're still ill, but have some semblance of a life still. I can't comment on your improvement, as I haven't observed you, but well, people who don't see how you feel 24/7 are usually biased in their opinons.

    As for alcohol, I can't handle it either - I get POTS (not normally a problem for me), dehydration symptoms etc.
     
  8. boombachi

    boombachi Senior Member

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    Good for you @AdamS. I have got my fingers and toes crossed for you
     
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  9. Tammy

    Tammy Senior Member

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    The brain needs lots of glucose.............I know the trend has been that it needs fat...........and I'm sure it needs a little bit of fat...........but it mostly needs glucose....(brains actually taste kind of sweet)..............so I think the alcohol is providing that glucose to your brain. I'm wondering if a tall fresh glass of orange juice would do the same. (not the crap from the store).

    If you are concerned about sugar balance.........I would not go very long between meals. Eat snacks in between meals that have a balanced sodium, potassium, glucose mixture. This will also help the adrenals to not get taxed.

    Are you taking anything to help support adrenals?
     
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  10. ryan31337

    ryan31337 Senior Member

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    You're welcome. If only I always practise what I preach....its hard in the real world :(

    Going off my own experience, which may or may not be relevant, be very wary of your activity levels after getting sick from other minor infections - you may need to dial it right back. Also be wary of antibiotic use and gut issues. I'm quite confident both of these started the relapse ball rolling in my history...
     
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  11. AdamS

    AdamS Senior Member

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    Yes I found this even when I was mild, i'd have to take snacks to work with me and eat them at around 10:30am between breakfast and lunch otherwise i'd start to feel spaced out. It would also happen on long walks > 5 miles. The funny thing was, I didn't think I had ME then, I just thought that was normal!

    I haven't taken anything to support adrenals, what would you suggest?
     
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  12. Marco

    Marco Grrrrrrr!

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    I appreciate that man do have problems with alcohol and that it's often included as a 'cardinal symptom' but there is some evidence that this may be overstated.

    Reposting this again :

    http://forums.phoenixrising.me/inde...patients-with-me-cfs.51002/page-4#post-842006
     
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  13. Diwi9

    Diwi9 Senior Member

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    I've reported on here before that I do better with alcohol. I only have wine, in the evenings. I think part of it is the GABA.

    Has anyone ever researched alcohol intolerance? The only people I've seen claim it is a cardinal system are Drs. de Meirleir and Myhill. A study showing so would be interesting.

    @AdamS - I went into "remission," but the ME was still there. Somehow I regained enough energy to live an almost normal life, or at least it appeared so to others. I started working multiple jobs, plus lots of volunteer activities, and an avid social life...and then I relapsed hard. Wish I had had all of the info on here before my relapse, but I was undiagnosed for 7 & 1/2 years. Are you on LDN?
     
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  14. overtheedge

    overtheedge

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    I used to have POTS but it went away around the time i started taking good bits of sea salt every day, I’m not certain that it was the sea salt that did it but it was definitely within a month or so of that that POTS went away and never came back. It might be worth trying if you haven’t already


    Alcohol has done strangely good things for me at times. Every now and then I’ll sip some alcohol, just a little bit, and then half the time I’ll feel good after and then feel great the next day when I wake up; would be nice to know why.


    I read something a long time ago about a phenomenon like this, said that alcohol would have the liver change gears or pathways and would lead to higher clearance rates of certain things such as the alcohol produced by intestinal microbes. Wish I could find the article.


    Don’t go too hard on your body. If I manage to get over this current bit of CFS I’m going to try and take it as easy as I reasonably can on my body for a year or two, the last two times I recovered I immediately started work and burnt myself out after a few months even though I felt great most of the time.
     
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  15. Tunguska

    Tunguska Senior Member

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    Congrats on surviving, I don't think I could manage that much. I can't handle alcohol anymore and started to ignore it as far as disease significance goes. But I can tell you it significantly affects neurosteroid levels and if you look around the studies they are close to center square for alcohol's effects. That's all I have to add; my own survival comes significantly from progesterone metabolites/allopregnanolone (affected by alcohol); even though this is not obvious to link back to the discussions on the forum assuming there is any; it's another thread to follow relating to your brain stamina problems.
     
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  16. Murph

    Murph :)

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    I had a huge remission. I've had two in fact.

    The first I took for granted. The second one? I took it for granted too, because I am a slow learner.

    After a bad four years I seem to be on the way up and into my third bout of improvement... There can be no doubt that this one I'm working my arse off to try to extend and sustain. The big things seem to be stress and time of year. My initial onset was in April/May and each year at about that time (autumn here) i get worse.

    I just went to Europe for May to see if I could dodge the problem factor. I felt pretty amazing over there but coming back has been a problem.. Is it Spring where you are??
     
  17. AdamS

    AdamS Senior Member

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    @Murph Yeah it's the start of summer here!
     
  18. gregh286

    gregh286 Senior Member

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    Hi Adam,
    I was were you were about one year ago.
    9 holes of golf, etc. Banging in Luco sport to keep going and stuff. Legs always heavy but managed it.

    I started the thread above on No2 black and it helped me tremendously for about 6 months, then effect is less and less. Now I dont need it all.

    I play 18 holes every day if i can, no payback at all. My CFS now is unnoticeable.
    I did much better on alcohol. 2 reason i believe. Immune suppression and body use alcohol as fuel. You will get same effect on high doses of amino acids. Alternative fuel supply.
    I go against low carb diet theory, by all accounts i always did better on high carb diet. As the acetyl COa chain is hindered, I always found flooding body with more carbs, aminos and fats during crash overcome this "partial" block.

    Heat always helped me, I think it improves poor detox status, allow body to use energy alternatively.

    I attribute my full recovery to probios, Vit e and vit d.
    Not all probios are created equal. The only ones I thought worth a f@@k where Garden of Life SBO. I tried VSL and all the others.

    In my own non medical opinion i believe CFS is initiated by gut hyperpermeability, in my case this is true. For others I cant say. I have many many reasons for that, angioedema, aggressive food responses, leaky gut test etc. This causes a immune reaction to shut down krebs to protect mito, or something to that effect. I also think in some way high stress changes microbiome to allow this to exist. Quite often I read CFS started with gut flu, infection, etc.

    I lived 5 years with CFS and all its brutality.
     
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  19. TiredSam

    TiredSam The wise nematode hibernates

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    After my first 9 months of ME, following a month of rest, it appeared to have gone. I could still go for long walks and stay out drinking until 3-4 am. 3 months later I crashed and 2 years later I haven't recovered back to that level yet, although I have been doing well lately.

    I now drink up to one glass of wine but no more, don't walk anywhere if I can help it and hardly socialize at all. I have a list of ME rules for me which I have honed over the years and which I make myself read every 4 days. At the top I have somewhat optimistically written:
    As I went downhill I wrote down the things I had to give up and ranked them in terms of how much energy they cost or how long I could do them for. If my improvement continues, the next thing on the list is to be able to do a day's work sitting in front of my computer. Until I can do that, I won't even consider socialising, going for walks, playing music etc, because even if I could do them now, resting before and after, I'm still not really well enough to if I can't even do the lower energy level task of sitting in front of my computer for longer periods.

    I really like the phrase "dangerously well" - which refers to noticing an improvement and being tempted to increase your activity. This doesn't mean I never intend to up my activities, but I'll wait a few weeks / months before trying, and even then it'll just be the next thing on the list. I'll be taking it real slow and listening to my body carefully.

    Well that's the theory anyway. Last week I was walking past my 15-year old son trying out his new pull-up bar, and as I'd been feeling so well that day I spontaneously decided to see if I could do a pull-up, with my wife leaning out of the window telling me not to and my son saying "won't it give you a headache?" I managed one pull-up and spent the rest of the day in fear of the possible consequences, I even considered coming on the forum and asking everyone to give me a virtual slap and tell me not to be so stupid. Luckily I seem to have got away with it, although I suspect my son now wonders whether I'm really as ill as I've been saying for the last three years. So I do appreciate the yawning gulf between theory and practice.

    I wonder if you've improved thanks to good management habits? Also, I find I can do more in the evenings because I just feel better the later in the day it is.
     
    Last edited: Jun 5, 2017
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  20. AdamS

    AdamS Senior Member

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    Perhaps, I do rest a hell of a lot and don't push myself, I listen to my body a lot more.
     
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