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Working with M.E.

Posted , 9 users are following.

balletdude
balletdude

I know many of you will have worse symptoms than I and probably manage to hold down full time work. I was diagnosed about a year or so ago, currently seeing a physio, for graded excercise which really doesn’t seem to work with me even after trying it for nearly 12 months.  They are also suggesting CBT which I’ve had for mental health issues in the past and I didn’t get along with. Along with my M.E. I also have symptoms of fibromyalgia, currently have what feels like tiny pinpricks everywhere (even my ears) and very restless legs (so much so I dread going to bed at night because I struggle to sleep with it)

Anyway back to the working question

I was claiming PiP for anxiety and depression but they stopped it as they said I wasn’t entitled, I’ve got a re-assessment in a couple of weeks for ESA, and I’m terrified that they are going to stop that. It’s not that I don’t want to work, but I’m at the point where getting up, washing, and making food really takes it out of me. I know it’s early days and it will get better, but I’ve no idea what I’d do if the stopped the ESA

This means I’d be on income support and have to actively seek work at reisk of losing benefits. How I’d cope with going out to do this and weekly visits to the job centre. 

I know it may not come to it but they did stop pip, went from 20 odd points too 0 (appeal pending) they said mobility wasn’t affected because I could walk across the waiting room, they don’t seem to understand that It’s the post malaise the next day and day after when I pay for it. I did ask for a home visit but was refused. Just sick of it all now. Family aren’t bothered and neither are friends. They know about the condition, but even if I ask for help get told they haven’t got time, or they get tired, or get a taxi or pay someone, same with family. Haven’t seen any of them for over a year.

Simon  

0 likes, 15 replies

15 Replies

  • wknight
    wknight balletdude

    Posted

    I used graded exercise to get better BUT the key component is learning how much you can do and NO MORE.Once you learn that threshold then you can start to manage the condition. My GP suggested lay down and do absolutely nothing for 30 minutes. Then maybe do a little and back with the 30 mins rest again. 

    Stressing out will only make you worse worrying, so try and focus on what you can do to get better. I had to stop almost everything and then very gradually introduce activity again. Lots of relapses but I now lead an almost normal life. 

    Best of luck

  • jackie00198
    jackie00198 balletdude

    Posted

    Simon--I'm in the U.S. so don't know about PIP. But I can't resist mentioning that graded exercise therapy (GET) and cognitive behavioral therapy (CBT) came out of the flawed PACE Trial, which has been largely debunked. GET can actually make you worse. And though CBT can help one cope, it is not the way to a cure as represented by the PACE Trial. I'm so sorry you're having all these problems navigating through the health system over there. I hope you'll get some help on this forum.

    • wknight
      wknight jackie00198

      Posted

      well it worked for me, so you can say it doesn't work I am living proof it does work 

    • jackie00198
      jackie00198 wknight

      Posted

      I hope I didn't offend you. It's great that GET worked for you. 

    • tracy47348
      tracy47348 wknight

      Posted

      Yes,that is great that GET worked for you! Are you in America? Over here they are proving it dangerous for mecfs. I just exercise when im able. Do believe we've got to do something to keep blood flowing. And i always end up doing too much. Some days, especially when i get 8 or 9 hours of sleep, rare, i almost feel normal but still have to rest in between. May i ask what all you did or do take as far as meds and supplements? I want to recover! Thanks! Are u the 60 mile cyclist?

    • andrew22534
      andrew22534 wknight

      Posted

      GET works for some people, probably around 30% actually benefit and recover to 90% of their original health and activity. the remainder it has been show to make a lot worse or no help at all or a small change. Overall the guidance is that if it is working continue if it isn't stop doing it because it will have a negative effect. As with all therapies some it helps some it doesn't. Please don't assume because it cured you it will cure everyone. 

       

    • Fidd
      Fidd andrew22534

      Posted

      There's recently been a lot of attention on claims about 'recovery' from ME/CFS with GET. 

      This article provides results for the recovery outcome which was prespecified in the protocol of the largest trial of GET for CFS so far conducted. It concludes: "The claim that patients can recover as a result of CBT and GET is not justified by the data, and is highly misleading to clinicians and patients considering these treatments."

      http://www.tandfonline.com/doi/full/10.1080/21641846.2017.1259724?scroll=top&needAccess=true

    • andrew22534
      andrew22534 Fidd

      Posted

      Thank You Fidd... needed a link to that again, much appreciated!!!
    • wknight
      wknight tracy47348

      Posted

      I took no meds or supplements. I retrained my body to accept exercise again. Its like learning to run a marathon when you cant even walk. Yes I managed cycling 60 miles last year. I still have milk relapses at times when I do too much but I pretty much lead a normal life. I had a confirmed diagnosis of CFS from one of the leading experts in the UK in this field. 

      To me the process makes complete sense, but why so many people claim that it doesn't work is because they all do too much and it will never work if you do too much. You can't run 2 miles when you can only run half a mile. 

    • andrew22534
      andrew22534 wknight

      Posted

      I think many also claim it doesn't work due to having more damage done to their mitochondria and more systemic damage to their CNS than GET is able to make better. The work from Norway Australia et al showing metabolic pathway changes, Inflammation markers, Brain structure changes all show the disease develops and perhaps goes beyond what GET can do. The process may well work in the early stages but a 70% failure of treatment rate for the "gold standard" treatment isn't a good rate nor is it just down to patients being unable to plan. There are many things which do help and GET is one of them. There are many people though that are very ill and other solutions need to be found not the same old GET works tough approach shown by a large number of professionals and a small group of fellow sufferers. The process does make sense - I use it for athletes and for myself (previously) when coaching and training. It doesn't  work for me now. Perhaps I am in the second phase - after relapsing 4 years ago..   I do find taking amino acids complex has helped take out my brain fog and improved concentration it helps with fatigue recovery but only helps. 

  • Fidd
    Fidd balletdude

    Posted

    Misleading claims about CBT/GET, and worrying links between flawed research like the PACE trial and DWP attempts to cut spending on disability benefits, have recently been getting quite some attention. MP's held a special Westminster Hall debate on this matter just this week.

    ?If you wanted to google for articles on this topic you could search for these titles:

    Getting It Wrong on Chronic Fatigue Syndrome, By JULIE REHMEYER and DAVID TULLER

    The Misleading Research at the Heart of Disability Cuts, by Simon Duffy

    Time for Unrest: Why patients with ME are demanding justice, by Nathalie Wright

    ?I'm sorry that you're in such a difficult situation. I don't know if it's good or bad news that you are far from alone!

  • lisa00385
    lisa00385 balletdude

    Posted

    There is so many variables with this disease. Someone should write a book and title it "what the hell happened". There are no cures. There are no easy answers. I really don't think in 20 years there isn't much I haven't tried as a possible therapy. If doctors said dance on one foot suck a tube of toothpaste and sing I would do it. Cognitive therapy is great to experience to retain some coping skills. The physical stuff is like p*****g up a rope...useless and painful. I have issues with doctors right now. I'm not on any medications. Just medical marijuana good diet, lots of rest and a little yoga. I've totally given up Western medicine right now. Two maxed out credit cards for medications and over $100,000.00 on medical bills. I have them down to 3500.00. And no success with anything. Everyone has to find there own path. I've yelled at doctors fired doctors tried to hold them accountable. And stress is our enemy oh boy is it ever. Keep toxic people away!!!! Little life suckers. I'm p****d at the whole system in your country and mine. I wish I had better answers for you. I'm sorry your dealing with this.

  • tracy47348
    tracy47348 balletdude

    Posted

    Take a calcium/magnesium/vit d capsule or 2 before bed. It helps me so much with restless leg syndrome at night. I know when ive forgotten to take one, my legs will start to twitch. Best of luck.
  • balletdude
    balletdude

    Posted

    Thank you everyone, some interesting stuff to read around.

    guess it's just a case of taking it dat by day, with the benefit assessments 

    Simon

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