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Very interesting Video CFS... you should watch

Posted , 4 users are following.

littleme1969
littleme1969

Doctor discussing CFS causes, new reaserach and what they think is really causing it.. Alot of what i thought myself. Auto imune and brain inflamation.. she explains why etc.. miss the firs 20 mins as its a bit boring and just geeral chit chat.

https://www.youtube.com/watch?v=nvRzUI97YLc#t=3870

1 like, 8 replies

8 Replies

  • david59662
    david59662 littleme1969

    Posted

    I have CFS & months and my MRI was normal, no inflammation. Immune system is also within normal parameters. CFS is a label used for so many people who are all suffering in numerous different ways.
    • littleme1969
      littleme1969 david59662

      Posted

      Its interesting as i haven’t had a normal white cell count for 20 years since all this started.. its always really high as if my body is fighting an infection of some kind.  The MRI wont show any swelling for most of us... as she explains its very hard to detect as the problem is minor within the brain, it only shows up on certain specialist tests done in research. She is outlining what our symptoms are and how they fit into existing conditions to try and narrow down which avenue they need to concentrate on in order to properly identify what if happening and possible causes. Like she says there are few illnesses that have multiple systems involved like CFS does.. and most of these fall into auto immune system problems. Was also interesting to hear that they are trialling drugs at the moment specifically designed for CFS.. so we can only hope they finally hit on something to help and finally pin it down.  After living with this for 20 years my gut tells me its auto immune as ive had periods of hair loss skin liaisons allergies serious bowel problems intolerances to certain foods.. all these are classed auto immune problems.
    • david59662
      david59662 littleme1969

      Posted

      I consider myself on the moderate end of the CFS spectrum. Prior to Nov2013 i was a very fit triathlete. You could say i had a virus as in the beginning i felt utterly awful, i am progressing forward, no new symptoms and getting stronger but the progress is very slow. I am 9 weeks into TCM treatment and what i like about TCM is that it treats the whole body. I'm not convinced at the moment it can cure me though. My WBC count was alwyas low in the beginning. I've went from 1.3 neutrophils in the beginning to now being 2.8 and total WBC count in the beginning at 3.0 to now 4.8 i think that is quite a significant change.
    • sally_14743
      sally_14743 littleme1969

      Posted

      It was apparent the medical profession knows so little about our brains and bodies and how they work. 

      And because CFS is not fatal research funding is low. 

      Also people do recover on their own over years .

      but some don't. 

      Right now our bodies have to heal on their own . But I guess pacing and being aware that this isn't all in our  heads but is serious breakdown of how our bodies work  enforces in us we need to allow our bodies to heal. 

      Stinks really sad 

  • littleme1969
    littleme1969

    Posted

    My case is unusual as it didn’t arise from a virus or infection. I suffered from Fulminating Pre-eclampsia  while having my son and almost died, maybe it was the damaged caused by that event or the amount of rugs they had to pump into me to keep me alive... but i was never right after that. I was told at the time that i could have possible fits and minor brain damage.. Luckily no major fits.. just the minor lapses and loss of long term and short term memory have become apparent over the years. I can go 3 - 5 years in between bad relapses and at time i do feel almost normal... i have read so many stories of people who thought they were cured.. only to have a bad relapse many years later.. i think the people who do get *cured* never really had it.. they were just experiencing an event of ill health that was prolonged due to stress etc.  But that’s just my   opinion and no doubt hopefully time will find a way to identify this problem better so more people can get a proper diagnosis.  I am never expecting them to find a cure.. im sure in the end it will end up like MS and lupus.. Once you have it its with you for life. You just have to learn to adapt and make the best of it. 20 years of living with it has made me see that when you constantly want it to be gone, looking for ways out of it, you only cause anxiety and frustration which makes all the symptoms worse and harder to live with. It was interesting that she picked up on that point. 100o patients with the condition long term where asked what had best helped them.. and that is just what they said. Acceptance ..and learning to live with it smile
    • sally_14743
      sally_14743 littleme1969

      Posted

      Hi 

      I think every case is individual. 

      Every case is complex. 

      My hubby had no big viral illness just a bad cold which he never really got over . 

      He got psoriasis outbreak at the same time and got ibs . Constant headaches sore throat and dizziness brain fog. I think if at that moment if they had spotted the diabeties and  he had stopped work and totally rested maybe his body would of recovered . But he couldn't as we had a family bills etc he after a year got worse so he went part time sleeping every afternoon didn't get worse but didn't get better. Then 2 years in we managed to sort it out so he could stop work go sick. 1 year of total rest he started to recover only to go down with diabeties which was ignored due to his CFS. Now 4 years 2 years no work being treated for diabeties all health issues addressed he is starting to improve . 

      Did his undiagnosed diabeties weaken his immune system in the beginning pre disposing him to CFS .? 

      Did your traumatic life threatening birth ,damage you permanently predisposing you to CFS. .

      It's so individual so dependant on causes and treatment . 

      Only time will tell 

       

    • littleme1969
      littleme1969 sally_14743

      Posted

      Your right.. the cause may vary from person to person.. but the symptoms seem to be pretty consistent.  Some have a lot.. some have just a few.. some like me have extra weird ones that i think are more to do with duration ... I know how hard it is to keep going.. i tried working 20 hours a week and bringing up 2 small children.. it about killed me. I guess i was lucky in as much i had a husband to support me and pay the bills, but i still had to bring up 2 kids and keep house etc which at time was a total nightmare.  I know how this can rob you of your life and your very self. I missed out on so much of my kids growing up due to this illness and that makes me both sad and angry.  Its a tough road that i wouldn’t wish on my worst enemy thats for sure xx
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