
Chronic Fatigue Syndrome Support Group
Chronic Fatigue Syndrome (ME/CFS) describes a sense of exhaustion and post-exertion malaise, even when you have gotten enough rest and sleep. The disease is characterized by six months of incapacitating fatigue experienced as profound exhaustion and extremely poor stamina, and problems with concentration and short-term memory. The cause is unknown, but it is a...

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How many of my fellow sufferers in Britain have tried to claim / are in receipt of disability living allowance? I put in a claim in July after being registered partially-sighted and was turned down. I appealed and got letters of support from both my GP and immunologist. I now have to have an exam. (ironically the only time a doctor comes to the house is to check if I'm really ill). Research online reveals that few claims based on CFS are honoured as 'sufferers - even severe sufferers - recover substantially in six to twelve months with CBT and graded exercise therapy'(!!!)
I feel v frustrated and angry about this. I was totally honest in my submission to the DWP and am only trying to alleviate, however slightly (the awards are not large) the financial strain on my husband. I have not worked for six year and would dearly love to be able to. Would love to hear your own experiences. Anne x
I feel v frustrated and angry about this. I was totally honest in my submission to the DWP and am only trying to alleviate, however slightly (the awards are not large) the financial strain on my husband. I have not worked for six year and would dearly love to be able to. Would love to hear your own experiences. Anne x
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It's stressful going through the process of claiming and HOW things are written on the application form can make a huge difference to if your claim is successful or not. I used to work for Age Concern and know that, sadly Doctors as supportive as they may want to be, do not always word things in the best way. It seems, in your case Anne, that your Doctor has come up trumps.phew.
I would advise anyone trying to claim any disability benefits to get in touch with DIAL. They can advise on what benefits are available, help complete application forms and support you through possible appeals.
Look up the site below to find a DIAL office near you.
http://www.dialuk.info/
One of the problems with the DLA from is that there isn't always enough option or space to write about the effects experienced from CFS/ME. So it means writing lots of extra bits wherever there is room are including a covering letter. Above all, I think we need to all talk about our worst personal experiences. One thing I learnt when working was that people get used to coping so, when asked, for example, if they are able to wash their hair an older person my answer yes. If you ask further about HOW they wash their hair, in detail, the person may give a very long answer that shows they can only do so with huge difficulty and are only able to wash their hair say once every 1 to 2 weeks because of the problem. Bear that in mind with every question, you may be able to do something but HOW do you do it, is it the same as before you had CFS/ME. Importantly do you need help to do anything. especially with personal care, including what you eat and how, if you can, you cook. Benefits advisors working for DIAL are trained to ask questions that get to the true picture of how people cope, or not, and will fill in the application form to show that.
I've seen many applications for Attendance Allowance (Disability allowance for older people in Britain) but would never attempt to fill one in myself.
It might be an idea Anne, even at this stage, if you can get some advice, if you haven't already, from DIAL.
I know the whole process of claiming DLA can be a battle and so very wearing.
Best wishes with the exam.
I so hope everything works out for you.
I personally think the DHS because the govenment have set tragets to get people of DLA pick on the vunerable that find it hard to fight back such as CFS suffers while those that are faking injuries or are claiming and working for cash in hand manage to have the easy time because the dishonest people are the ones who can more than fight for their claim.
I wish you luck with your appeal and hope they see sense and try to have a little understanding
The council applied for incapacity benefit for me! The benefit office advised me to apply for disablility also, which I did in January 2007, it was denied 3 times. The citizens advice went with me to appeal, they were hoping I would get the lower rate care and lower rate mobility, but at the appeal they only granted me the lower rate care, which I have just received payment for in October.
This week I was made to go for a medical concerning my incapacity benefit. If I didn't go my benefit would be stopped. Still waiting to know the result!
I had a doctor who came to the house for the disability benefit. He asked me to walk around the table and upstairs and because I was able to do this once he wrote in his report that my mobility was fine. I asked for a copy of the report. Many of the questions on the report that he should have asked me he never had, and had just put down what he thought I was capable of, ticking them all!
The DLA doctor even told me to take more of the Amytriptiline, telling me that my condition was probably due to depression!!
I wrote a letter of complaint to the DLA about the doctor, and my Citizens Advise Rep. tried to comment about him at the tribunal but they were quick to dismiss it. They know he did wrong. So I think the award of lower rate care was more a hand out due to guilt and to shut me up!!
These people don't understand our plight, and suffering. They don't want to listen to the people that matter, only those in power, their employers, the government, who want everyone to believe that ME/CFS sufferers have a psychological disorder!
Please read some of my posts it will enlighten you.
I was also sent for CBT & GET. What a waste of time.
We have a neurological disorder, we are not psychologically deranged.
ME is a disorder of the nervous system, like MS, Parkinsons etc. How many MS, Parkinsons sufferers are made to go to CBT/GET? 0 I think could be the answer.
My poor husband is suffering also, as a result of this disease. As you also say, all the pressures, especially financial are placed on their shoulders.
It is not only the person with ME who suffers but the especially the immediate family.
I would say go for it. Fight your corner. The more of us that this government have to contend with the better!
Good luck to you and yours.
Dizzi X