Followed ESA50 instructions - scored 0 points...

I suffer from Chronic Fatigue syndrome and have been receiving IB then ESA for the last 7 years. My condition has not improved over this time. At the start of the year I was finally moved onto ESA which went ok. Then 6 months later I was asked to re-asses. I decided to be safe and join this community.

I followed the ESA form instructions and if anything I felt like I had put a realistic but quite negative picture on my health. The problem with CFS is that it fluctuates daily in an unpredictable way. However anyone reading my ESA form (which I kept a copy of) would realise Im not fit for work.

So I got the results back and for the first time in years I was failed - but very suprisingly I got 0 points. The only explanation I can think of for this is that I filled out the 'It Varies' box too much - which perhaps gave them the opportunity to mark down as 0. Actually I said it varies but for the majority of the time the answer would be 'No'. However I thought because you can be awarded points for 'It varies' then that would be ok. I went into good detail each time I filled in the explanation and it took a lot of time and energy to do it this way. I thought it was a reasonable thing to do however. Perhaps I was wrong. Having CFS with the variance - is a difficult situation. I dont like the idea of giving a flat 'No' to something - but then once in a while - perhaps I 'could' do it? Im paranoid about someone watching me or something...

And now I have been punished. I suppose Im going to have to appeal and reconsider it all. It is ridiculous how bad my health is but what they constitute as an ability to work. I cant really understand how they could give me 0 points after what they read. They must be sticking to targets or metering out what they consider 'tough love'...which is actually harrasment and abuse.

Anyway if you have got this far thanks for reading and please do let me know any thoughts...if you have any particularly on the failure rate and the 'It Varies' box...

Lots of sympathy - and your example may help others with ME/CFS, like myself.

One other angle which you didn't cover here. How far is your GP onside? If their report was hostile or dismissive that might have told against you. You'll need to see the DM's reasoning first (can't remember what it's called - SAR??), but that would also be indicative.

I don't know your personal circumstances and I know they are not appropriate for discussion here, but there is with ME always the question of diagnosis. If you had a diagnosis by a hospital specialist - someone with the right letters after their name - then your case is better and if you are seeing a consultant regularly that is even better.

I hit this problem a decade ago. My GP reported that he didn't see me much - but when he did, he always seemed to think that I shouldn't be bothering him with my hypochondria. Eventually I changed GPs, but in the meanwhile I found myself a specialist and saw him privately, when the GP wouldn't refer me. When I went to appeal I had a letter saying that I "clearly" had ME and had had it for a long time.

Hi,

very interesting.

Did the D/M know that you provided a report from a specialist that you privately saw???

As this obviously had a great bearing on your diagnosis.

Well Done.

Radhika.

hi guys thanks for the replies

so I have had a official diagnosis from an expensive psychiatrist privately through work health insurance a long time ago which I referred to in the forms. I worry now as I havent seen my GP for about 6 months. He's a nice guy but he cant actually do anything lets be honest - and he really messed me up overprescribing sleeping pills which made my symptoms much worse - so Ive been going through a horrendous withdrawal. Ironically its been the worst year yet. I just moved area so I havent seen my private practitioners since march....thing is its been 7 years and anyone with CFS knows things dont change quickly...god knows how much Ive spent on treatment...

Anyway definitely right - Ive now requested all the details to that should be interesting...

carruthers sorry to hear you are also suffering from this horrible condition...Im a 31yr guy and its wiped out most of my twenties...Im really fed up now...glad you binned your GP - some of them are nice and do what they can (all they can do is be nice and do a few tests that a CFS specialist might suggest)...but some really dont have time for it. They cant deal with something they dont understand or cant help....

Hi

I suffer from Fibromyalgia which is closely related to CFS and I have been really lucky and had support from both my GP and a specialist Rheumatologist but I remember when I was being referred to see the specialist, my GP warned me that not all doctors acknowldge Fibro, ME or CFS as being real diseases.Some still think they are psychologically based.

Because there are not cut and dried tests that can prove or disprove their existence, no blood tests,MRI's or x-rays that show the problems, some, not all doctors are very spectical, in spite of all 3 being recognised by the Dept of Health and the DWP as very real and potentially disabling conditions.

Nothing more to add but the very best of luck with your appeal.