New report on severe ME, "My life stopped ..."

[Dolphin]

http://www.actionforme.org.uk/get-involved/raise-awareness/severemetimetodeliver

Severe M.E. Time to deliver

“I have gone from a fit, healthy and active 37 year old with a job that I loved and a toddler I adored and done everything with, to being bed bound/housebound most days and completely reliant on my mum and husband should I wish to leave the house as I have to use a wheelchair. I’m about to lose my job. My daughter, who will be three in April, can’t ever remember her mummy being well. I require a great deal of help and support around the house and to help me care for my daughter. My journey so far with M.E. has been soul destroying/heartbreaking/devastating. I’d give anything to have my life back.”

That’s the reality for one woman with severe M.E., featured in “My life stopped…” http://docs.com/@jessica.rowe.581

This new Action for M.E. report, launched at our Severe M.E. Symposium and AGM http://www.actionforme.org.uk/get-informed/news/our-news/severe-me-symposium-and-agm-today.htm on 14 November 2014, focuses on the experiences of 298 people identifying themselves as severely affected (out of 2,081 total respondents with M.E.) who took part in Action for M.E.’s 2014 health and welfare survey.

Along with statistics from our initial M.E. Time to deliver http://www.actionforme.org.uk/get-involved/raise-awareness/me-time-to-deliver/ report, substantial qualitative analysis has been solely undertaken by Dr Andrew Pates, for whose time and expertise we are profoundly grateful.

“My life stopped…” http://docs.com/@jessica.rowe.581 presents a stark reality of life with M.E. at its most severe, including:

• the impact on individuals, carers and families
• the social, emotional and financial cost of severe M.E.
• healthcare and welfare benefits for this most vulnerable patient group.

(Apologies that the report link takes you to another site - we are experiencing some technical difficulties with hosting the document on our own site at the moment.)

 

[Dolphin]

On my first read, the report seems good. A lot of it is made up of quotes from people who filled in questionnaires.

I'm a bit surprised there is no mention of CBT, GET and other rehabilitative strategies. I think there is a reasonable chance that some people would have become severe from their attempts to rehabilitate themselves so I wonder was a decision made not to include any such quotes.

 

[Bob]

If anyone's struggling to understand where to find the report, it's available to download as a PDF here:
http://docs.com/@jessica.rowe.581

 

[Bob]

I haven't read it all yet, but I think it's a very good report on first glance.

There are many quotes and experiences that I relate to...

One quote particularly grabbed my attention, as being particularly pertinent to living with moderate to severe ME:

My life ‘stopped’ at age 36 years, and has been reduced to merely surviving symptoms on an hourly, sometime minute by minute basis.”

 

[Min]

I'm sure I was only one of many to tell them that graded exercise pushed my myalgic encephalomyelitis from moderate to permanently severe; what a shame they chose to ignore this. The charity never ever criticise the current 'treatments' available at the fatigue clinics; I guess this is because they were part of PACE and work closely with Prof White.

Given the information severely affected patients have spent time and energy sending them, there really was no excuse for their symposium on severe ME to be so dire.

 

[Simon]

Wow, I think this is a terrific report, brilliantly presented. Above all it moved me, greatly.

I don't suppose AfME will mind me quoting extensively from the report:

“I don’t have a life.”

“I struggled on without diagnosis for eight years. Retired aged 30. My life ‘stopped’ at age 36 years, and has been reduced to merely surviving symptoms on an hourly, sometime minute by minute basis.”

• 96% said they had stopped or reduced household tasks
• 95% had stopped or reduced social contact
• 74% require full or part-time care

“Everything given up except eating, drinking and showering once a week.”

“Ill from Jan 1980. Had to apply for early retirement in 1995. Mum looked after me until she got Alzheimer’s in 2004. Now on my own.”

“Feel cut off from the world depend greatly on my husband and two children. Very low never seem to see any hope to get better.”

“M.E. won’t kill me but it had a bloody good try at killing my spirit, my confidence, my life.”

“Live on my own but have now lost all contact with former friends and family and too damn tired to care.”

Difficult to maintain contact with family and friends, many lost. No social life, great strain on marriage.”

On applying for benefits:

“Hell on earth”
“Harrowing”
“Very, very difficult”
“Awful... extremely stressful”
“Abysmal, degrading and de-humanising”
“Extremely stressful. Extreme energy needed over very long periods.”

The report closes with this quote:

“I have gone from a fit, healthy and active 37 year old with a job that I loved and a toddler I adored and done everything with, to being bed bound/housebound most days and completely reliant on my mum and husband should I wish to leave the house as I have to use a wheelchair.

I’m about to lose my job. My daughter, who will be three in April, can’t ever remember her mummy being well. I require a great deal of help and support around the house and to help me care for my daughter. My journey so far with M.E. has been soul destroying/heartbreaking/ devastating. I’d give anything to have my life back.”

Edit: the pdf of the file is now available for download from Action for ME here

 

[justy]

This is a really good report on the experiences of those with severe M.E.

I'm still not sure how severe M.E is assessed - reading through these comments I realise I fit the severe but not very severe category - think I have been in denial. My experience would not be out of place amongst the comments in the report - it's good to know someone is listening. Lets hope AFME start to step up to the plate now.

 

[Valentijn]

If it's impacting your ability to shower as often as is culturally expected of you, I think it's safe to call it severe

 

[NK17]

If it's impacting your ability to shower as often as is culturally expected of you, I think it's safe to call it severe

Well said @Valentijn!
If you can't shower as frequently as you would like to and when you do you've to sit, can't walk to your mail box, can't drive anymore you have a pretty severe case of ME.

When you depend completely on the care of others and have to lay in bed in almost complete darkness, you have an extremely severe case of ME.

 

[Gingergrrl]

I have tried to open up this file to read it on both my phone and computer and copied the link to different browsers (Chrome and Safari, etc) but it will not download or open and I really want to read it!!! What am I doing wrong?

I am definitely in the severe category as right now I can only shower once a week with a shower chair and use a wheelchair when we go out. I require help from my husband, parents and friends with just about everything that requires physical energy or the ability to breathe while standing.

I can still open mail and pay bills and help my step-daughter with her homework but I cannot lift anything, cook, clean, walk my dog, or do any of the things I took for granted.

 

[Dolphin]

I have tried to open up this file to read it on both my phone and computer and copied the link to different browsers (Chrome and Safari, etc) but it will not download or open and I really want to read it!!! What am I doing wrong?

I'm attaching it now.

 

[Gingergrrl]

@Dolphin Thank you for posting the link and that was really heartbreaking to read. It made me really sad. It also made me realize the number of British words that I do not know what they mean!

 

[justy]

@Dolphin Thank you for posting the link and that was really heartbreaking to read. It made me really sad. It also made me realize the number of British words that I do not know what they mean!

Well, give us a list and we'll do our best to tell you what they mean.

I am still able to shower, although it is tiring I can still potter a little at home, but less so these days. I ownder if my ability to shower is because I don't have POTS? I've only had a bath tow or three times in the past 5 years - I wouldn't trust myself alone in the house to have one and they always make me feel dizzy and spaced out. It's a shame because I used to love baths.

Last summer I drove a little alone - once a week to get my daughter from her dance class - but haven't driven a car at all since then. Yesterday someone I know asked me how I was, I said I was feeling a little better, but not great since the week before and she said that it was probably from going to Cardiff on Saturday. I told her I hadn't gone to Cardiff for the day, that my husband had for work. She replied that she thought I had gone to Look round the shops, or to the museum with the kids while my husband was working (he works from 9 - 4 and its a two hour drive each way).

I told her that I couldn't do that alone (or at all at the moment) that I couldn't go out without my husband or other carer at all. She seemed surprised and said again that she thought we would go for the a nice day out, me and the children. I pointedly said 'no, I can't go out alone. I need someone to push my wheelchair, (she knows this!?) I am much too ill to go out and do things like that - I haven't been out alone for 6 years.' I couldn't have been more straightforward, but she still looked confused.

 

[Revel]

Spooky, @justy. I'm originally from Cardiff and last week I was speaking to a family member about the city and how I'd love to go visit the museum and take in the sights as I miss doing such things. She suggested I take a day trip on Saturday. When I said that I wasn't physically able, she looked so surprised!

I only leave home for hospital appointments and to occasionally visit my Mum, who lives on the outskirts of Cardiff. I haven't driven for 18 months. I live in the downstairs part of the house to avoid the stairs. I weigh under 90lb and can barely raise my arms to my head. Why are some people so wantonly blind to the reality of our situation?

I look forward to bumping into you at the museum, @justy. Er, next weekend good with you ?

 

[justy]

@Revel - that's a date!