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TOPIC: Long term ME/CFS

Long term ME/CFS 4 weeks 17 hours ago #201176

Hi,
I have suffered from ME/CFS since mid 1980s. I had to take early retirement in 1992, but was awarded IB and DLA at the time. I am now on state pension,
I have had the DLA-PIP letter, done the phone call and the form arrived yesterday,
My basic problem is - I have moved away from the area I was first diagnosed in. My GPs (2) have advised me that one doesn't accept the validity of my illness, and the other is ambivalent.
All my medical evidence dates back to the late 80s early 90s, which state categorically that my condition is chronic, and will not improve over time.
I have evidence that I have used in IB/ESA claims in the past, and I intend including all the previous documentation from the past.
it is unfortunate that there are no available specialists for ME/CFS in my area, so I cannot turn to them, even privately, for a reassment of my present condition.
The completed form is due back 6th December, which a short timeline for me, but I can ask for an extension.
I have read most of the documentation from B&W and it is very helpful for filling the form, but will my lack of up to date medical evidence work against me?

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Long term ME/CFS 4 weeks 14 hours ago #201210

B

Welcome to the forum, you might want to have a look at the following FAQ which explain where everything is

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Being pragmatic, this is not a problem that you can solve :( even if your GPs were supportive and there were ME facilities in your area, you would not get a referral in time for it to be of use for your PIP claim.

So you need to work with what you have

Requesting your medical records

Charging for medical records

There may be information from when you were originally assessed for ME that would be oh help, for example a diagnosis letter, there may also be information about the level of disablement that you suffered from then which may still be usable, despite its age, now if you are still suffering similar problems.

Other than this I would recommend that you make a list of the problems that your would have with each of the PIP activities, look for common problems, providing a consistent explanation of your problems can make a big difference towards you scoring points.

We have seen members be successful with just a diagnosis letter and how they filled in the form so it can be done without lots of medical evidence.

If you have further questions then please reply to this post and we will do our best to help.

Gordon
The following user(s) said Thank You: btaylor49

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Nothing on this board constitutes legal advice - always consult a professional about specific problems

Long term ME/CFS 3 weeks 6 days ago #201274

Thanks Gordon. I will contact GP regarding medical history and I take your point on consistency of response, although ME is totally inconsistent!!:laugh:

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Long term ME/CFS 1 week 17 hours ago #202654

I have been working through the form and the excellent info on B&W, and am nearly at the point of putting the final form together. I have needed an extension. One point of interest I have is:
in the information document from B&W it advises listing the symptoms of my illness. Would it be helpful if I listed the symptoms that affect me for each of the Qs3-15? It will take up a lot of space in the boxes and lead to extra sheets to be attached, but I don't mind doing that if it makes it crystal clear to the DM exactly what is happening to me. is listing symptoms for each response going too far?

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Long term ME/CFS 1 week 15 hours ago #202664

btaylor49 wrote: in the information document from B&W it advises listing the symptoms of my illness. Would it be helpful if I listed the symptoms that affect me for each of the Qs3-15? It will take up a lot of space in the boxes and lead to extra sheets to be attached, but I don't mind doing that if it makes it crystal clear to the DM exactly what is happening to me. is listing symptoms for each response going too far?


Forgive me but I am a little confused by your question, completing the PIP2 is all about your describing how your symptoms limit you ability to complete the PIP activities!

Gordon

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Nothing on this board constitutes legal advice - always consult a professional about specific problems

Long term ME/CFS 1 week 13 hours ago #202684

Sorry Gordon, I'll try and give a better explanation.
I have a complex set of symptoms, but not all are relevant all of the time.
I have produced a list of my symptoms to help me deal with the 'extra 'info' for the questions. Not all my symptoms relate to every question, e.g. reading, preparing a meal.
My question is, for each of the questions in the form do I list those specific symptoms relevant to answer the question each time, or is it sufficient to simply list all my symptoms on one sheet and refer DM to that in each answer?

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