Are you being forced to find employment ???

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Are any of you with CFS ME that are being forced/pushed back into employment? I have suffered now for 8 years and I have always been advised to manage my activities and time etc so I will hopfully remain as symptom free as possible. My ex wants to stop paying my maintainance and says I should support my self. I'm 58 ...who will take me on? What are you thoughts and or experiance .....

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  • Posted

    It sounds like you've been managing your illness by, in part, not working. You should absolutely continue to do this. I don't know what country you're in, but can you get on any government assistance program? I hope you can find a source of support other than your ex, and other than working.
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    • Posted

      Hi Jackie, thank you for your reply. I live in the uk. I have been divoeced for 5 years and last year I finaly got settled from the divorce fall out so I tried a two day a week cleaning job to top up my maintainance. The 2 days where together and after a few weeks I had to split them up as day 1 I was ok but day two I really struggled. after a few months of loosing any quaulity to my life, I worked two days but intotal lost 5 -6 because I was poorly, I aske to go to one day but they wouldnt let me. I work 1 day voluntery at a womens refuge, I enjoy being helpful, needed and back in the work place, I can stop for a cupps or or leave early to suit my needs. I took my ex back to court to increase my maintainance by a small amount now he is fighting to stop it all and insists I can support myself. Finding a job is one thing finding a new job with employees that will accomodat me is a huge stress in it's self. I feel stronly that people with CFS ME should have control over their lives as we loose so much that healthy people just dont realise....
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    • Posted

      There is no way I've been able to work. When I first got ill, I applied for government assistance (Social Security, here in the U.S.). I got it after having my ME/CFS doctor write a letter explaining my illness and level of disability. Do you have a doctor that could do that for you? I would think such a letter would carry a lot of weight in court. Your husband can insist that you can support yourself all he wants, but if a medical professional states the opposite, I think your husband's claims would be negated.
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    • Posted

      that's incredible that you were able to get disability! would you mind sharing some of what your doctor included in the letter? perhaps some specific diagnosis criteria? (i've applied, and am in the appeal process, but never dreamed that someone with CFS could actually get approved for disablity in the US unless they are completely bedridden and unable to leave their home.) did you include the tilt test, or MRIs, post-exertion migraines, or anything else that is more black/white scientific? also, what state are you in? i have yet to find a doctor in michigan who will diagnose CFS. since i had an unrelated growing brain tumor that had to be removed, i was able to get a functional MRI, similar to the stanford study that shows distinct brain abnormalities in individuals with CFS. however, i can't get my doctors to ask the neuroradiology team to review the imaging to see if my brain fits the CFS profile they found. argh! so frustrating! anyway, any disability tips would be much appreciated. thanks!
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    • Posted

      Hi, Katrina--Yes, people with ME/CFS can certainly get disability. Way way back years ago, they couldn't. But then new protocols were enacted that made ME/CFS an acceptable reason for disability. I got my disability approaved in 1999. Here's what happened. When I first applied, I was rejected out of hand. In other words, the Social Security reviewers hadn't even read my entire application. The woman I spoke to, in a moment of amazing candor, told me that it is typical and common for applications to be rejected the first time. Then, in certain areas of the U.S. (not everywhere), you can appeal the claim. Otherwise, you have to hire an attorney and go to court. Luckily, I'm in an area, and I guess you are, too, where I could file an appeal. I wrote a very personal letter that also very calmly detailed my typical day and my symptoms. Then I had the rheumatologist whom I was seeing for the ME/CFS write a detailed letter about my case. I never had an MRI or a tilt-table test or any other test. He'd done bloodwork that ruled out other illnesses. I don't have a copy of this letter. It was written such a long time ago. I won the appeal, to my great relief. At the time of the appeal, I wasn't bedridden or even housebound, like I am now. But I was suffering immensely with debilitating fatigue. My advice to you: it's imperative that you find an ME/CFS doctor who can diagnose you and write a letter for you. An infectious disease specialist or rheumatologist should be able to do this. You may want to Google "Lauren Hillenbrand ME/CFS" to find out the doctor she's seeing. I have a vague memory that he could be your general area or in an adjoing state (if you're able to travel). The fact that you had a tumor should have absolutely nothing to do with getting a proper diagnosis for ME/CFS. And you don't have to be at death's door and get multiple tests to be able to get disability.
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  • Posted

    Hi Susan

    I think you should be able to claim benefits if you are not fit to work and have no other means of support. Depending on where you live you may have to claim Universal credit but if it's not yet rolled out in your area you can try claiming Employment Support Allowance (ESA). These benefit are means-tested unless you have paid enough NI contributions in the last 2 years and qualify. To get this, it will help to have a good Dr on board who will agree to provide 'fit notes' (used to be 'sick note'). You can claim by phone and they will send out a detailed form to complete explaining how your illness effects you and why you can't work. Good idea to get help via CAB but lots of advice and info on the internet too. You may also be able to apply for PIP which is non-means-tested for people with disabilities. I advise you to find out as much as you can before you apply and get help if you need to. Is your home rented? You may get housing benefit or local housing allowance. If you have a mortgage I think they can help pay the interest. Also, are you able to take a lodger?

    I hope you manage to find a way through without making yourself more ill.

    Good luck.

     

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  • Posted

    Do you have a confirmed diagnosois of CFS from a consultant? If not get one and follow that up with a letter from the consultant where he outlines your ability to work, if any. 

    This is the evidence you need to prove that you are not fit to work or may only be fit for say a day. That way you can still claim maintenance from him . 

    Sorry but as a taxpayer I am fed up of people claiming benefits from the state when the father or other half should be paying their fair share. Pension is not an option as its 66 to get any state pension in the UK, unless you work in the public sector where they often get their pension in their 50's. 

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    • Posted

      Yes I do and doctors letters, the court accepted my information at the time of the divorce and they have accepted my up to date info, my ex wont. He's on £100k plus and started off buy saying I should support myself or claim benifits. He went on and on so the judg asked me to find out what if any benifit I would receive. I did and with the amount of maintainance I am receiving I would get nothing or without, around £300. He lost that so played on my getting employment.He wanted me to get an experts report and for me to pay £1000! the judge said no. I agreed to have the reprot done as I was confident with the out come. He was ordered to pay the fees. The report confirms ME CFS etc however the expert says that with management and cognative theripy 'IT could iimprove my work abbility significantly' which my ex has gone to town on that statement...I am also litigant in person which is massivly stressful and they are still expecting me to be looking for employment..the last corrospondance asked'What steps have I taken to find employment since the date of the first hearing' (2/10/15) next hearing end of Jan 20016 
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