How can you prove you have pots with cfs/me?

WeAreGhosts

i have the same problem with baths, i am scared of drowning!. so i just don't have them. i sometimes faint in the shower but know the warning signs and can get out before i hit the floor. you can get shower chairs and getting a new shower head where you can regulate the flow helps too.
i don't claim benefits for my POTS. there are lots of websites and forums out there where you can read about coping mechanisms

hmf wrote: »

Unfortunately I don't have enough energy for a shower. It might sound silly but sitting on a stool with a little bit of water tricking over me sounds like torture.

sounds like? does that mean you haven't tried having a shower?

nannytone_2

tea-bag wrote: »

How come you can't do a meal but can do housework?

https://forums.moneysavingexpert.com/discussion/comment/66932240#Comment_66932240

https://forums.moneysavingexpert.com/discussion/comment/66868860#Comment_66868860

how can i go to the gym and exercise vigorously but be unable to walk along the street alone?
how can i operate a computer but be unable to read a letter?

i can hoover ( i bump into furniture and may leave a few bits behind) but am unable to cook a meal?
you are showing your complete ignorance of what disability is.
it doesn't mean the total lack of ability to do ANYTHING...
just those things that require you to use the abilities that you have lost

mirry

I have pots with neurocardiogenic syncope & ehlers danlos syndrome.
My joints sublax/dislocate daily (have a dislocated sacroiliac joint) and my heart races very fast with any simple movement. I can not have a bath due to it making me faint so we had a shower fitted.i have to make sure I have a Luke warm shower whilst sitting. I do not get a carers allowance.

mirry

All you would need to do is get your gp to take your pulse sitting & then standing. Mine was 60 sitting & 138 standing. Then they sent me to the London autonomic clinic for further tests. There they found my heart was between 32 - 148 from laying to standing and all my blood pooled in my arms and legs (not enough blood in my heart & brain).
Then they gave me a slow gentle stress test, cycling whilst laying down & my heart went crazy to 192 once I stood up.
It's a nightmare of a condition, basically the body has lost it's autonomic function, body temprature, digestion, pulse, blood pressure.

notanewuser

mirry wrote: »

All you would need to do is get your gp to take your pulse sitting & then standing. Mine was 60 sitting & 138 standing. Then they sent me to the London autonomic clinic for further tests. There they found my heart was between 32 - 148 from laying to standing and all my blood pooled in my arms and legs (not enough blood in my heart & brain).
Then they gave me a slow gentle stress test, cycling whilst laying down & my heart went crazy to 192 once I stood up.
It's a nightmare of a condition, basically the body has lost it's autonomic function, body temprature, digestion, pulse, blood pressure.

Yep, that's exactly how it is for my sister. She was on a drug trial with the world's leading specialist which really seemed to be helping. Then he retired and they disbanded the team. Now she has nothing and just has to get on with it.

Better_Days

OP, my understanding is that with DLA and PIP the issues is not so much your diagnosis, but how your symptoms affect your ability to perform activities of daily living. When you fill in the forms you do need to keep repeating yourself on every descriptor, detailing the difficulties you have.

Medical evidence can help great deal, but some reading this thread may not be aware that it can be very difficult to obtain medical evidence. Some GP's refuse to give medical evidence, or charge for doing so.

ME and CFS are poorly understood by GP's and other HCP's (although of course there are exceptions). ME and CFS are 'invisible' conditions, patients can look OK from the outside. The unremitting level of exhaustion after minimal physical, cognitive, emotional, sensory activity can be difficult to appreciate. I tried explaining it to a nurse at the breast clinic, and she replied 'oh well, we all get a bit tired sometimes'. If you've had flu you will know that even lifting up a cup of coffee is too exhausting. That is what ME and CFS are like all day every day. The most poorly patients do not have the energy to swallow, need to be tube fed and are unable to speak.

Also people with ME and CFS suffer from 'post exertional malaise'. What this means is that the patient may be able to undertake an activity with difficulty BUT, there will be a delayed exacerbation of symptoms, which reduces functioning and which can take days, weeks or even months to stabilise. The delay in excerbation is usually between 24 and 72 hours. This makes the conditions difficult to manage, and those at the DWP may not understand how severe relapses can result from minimal activity.

Many people with ME and CFS don't have access to a specialist clinic, and even those that do, the clinics do not provide ongoing care, but simply diagnosis and initial support. Again medical evidence may be charged for or not supplied. The level of care offered to people with ME and CFS is vastly different to other neurological conditions such as MS or Parkinsons. (ME and CFS are classified by the WHO as neurological, a classification accepted by the Dept of Health)

Prognosis is variable for people with ME and CFS, with younger age and lower severity being a predictor of a better outcome. Still only about 10% of patients get back to a pre-illness level of functioning and even then, sadly patients may become symptomatic again years later.

The large PACE trial done a few years into the interventions used at many specialist clinics (CBT and GET) found that after a year, more patients were on benefits than at the start of the trial and none had got back into work or full time education.

Astonishingly, despite this, these interventions were trumpeted by those who carried out the trial as curative for between 30-40% of participants. The failure of the peer review process in scrutinising the use of data in this trial should be of concern to all. For anyone who is interested there is a series of You Tube videos by MEAnalysis which explains how the figures were fiddled. This is the best https://www.youtube.com/watch?v=PJf27ExfyMA

Basically outcome measures were changed after the trial started so that it was possible to enter the trial with a physical function score of 65, deteriorate to a score of 60 and still be classified as 'within normal function' at the end of the trial, ie the same as someone who is fit and well. The average score for a healthy adult on this scale is 95+, but the trial authors changed the definition of 'normal function'. Anyway I digress.....

OP have you looked at the Benefits and Work guides to claiming PIP and appeals and tribunals: http://www.benefitsandwork.co.uk/ You do have to pay to join but the guides are excellent and I think worth every penny. It's currently £19.95 for a year, but I have been offered a discount to renew each year. This is what B&W say about PIP http://www.benefitsandwork.co.uk/personal-independence-payment-pip/pip-claims

hmf_2

Thank you better days. You explained the problems of obtaining medical evidence better than I could of on here.
Yes I'm a member of benefits and work but try and read there guides when my brain is having a better day and has less brain fog than normally. They are fantastic and give us the help and encourage to fight back and stand up to the DWP and the games they play.