PE01690: Review treatment of people with ME in Scotland

Suffering, daily suffering, living with PAIN, is soul destroying PLEASE IMPROVE CARE AND TREATMENT for ALL suffering this debilitating condition.

Mari

20:10 on 17 May 2018

I've had CFS for almost 30 years. My entire adult life has been taken from me as I fell ill at 17. I have never had a chance to live a normal life, be what I wanted to be, have a partner and a family, all the things that most people take for granted. I've been treated appallingly by many doctors and consultants and the nearest CFS clinic is over an hours drive from my home(local on was closed down) so I couldn't attend if I wanted to. The clinics only offer CBT and GET which in patient circles are very well known to cause damage to sufferers. Many of my friends have been made substantailly and permanently worse from being pushed into such programmes. I'm mostly housebound, unable to care for myself, unable to see friends or family for the most part and still face disbelief, ignorance, arrogance and disinterest from the medical profession which is absolutely disgraceful and unacceptable. Something needs to change, and change is needed NOW!

L Watson

12:58 on 17 May 2018

have been severely effected by ME for 25 years 7 of which I was bed-bound and the remainder mainly housebound. I was shocked when I moved to Scotland that there was no ME specialist in the West of Scotland and in fact only 1 ME nurse in Fife and that there has been no funding for research into the illness has been in Scotland. I like the many thousands of other sufferers want our lives back, My divorce maintenance* has ended, and as I have another 4 years until I retire, I for the first time in my life, will need to apply for unemployment benefit: ESA. It is my understanding that being disabled due to M.E, as it is deemed a psychosocial illness, I will have difficulty getting it. I receive indefinite DLA at the higher rate for mobility and use the money to pay for taxis and a boot mobility scooter. I also receive the middle rate for care which I use to pay for care. However I am aware that having ME and a musculoskeletal injury, being transferred to PIP, will not be guaranteed. I feel very concerned. We has been neglected, too long.

Carol Ann McGregor

11:53 on 17 May 2018

I have been ill for over 45 years. As well as the tremendous difficulties and losses for me myself, my training and talents have been lost to society. I have had to live with rejection and disbelief and virtually no help from the medical profession. While there is now a body of research showing the physical basis of ME, a massive and purposeful attack on the cause or causes of this life destroying illness, using all the resources of the state, is badly needed. People are still falling ill every smonth and every year, and losing their health permanently to this appalling disease. Please act to conquer this scourge with proper research and funding focussed on diagnosis and ultimately the right treatment.

Onora Ni Shuilleabhain

9:49 on 17 May 2018

Stop ruining the lives of M.E. sufferers with Graded Exercise and unhelpful CBT.

Catherine Ashenfelter

8:46 on 17 May 2018

I have struggled for over 40 years with little or no help and not even a diagnosis till recently. Members of my family are starting to have some of my symptoms. They can not and must not have to endure what I did. They deserve help now. It's too late to help me, but it's not too late to help them, which in turn will help me knowing they won't have to suffer like I did, alone. PLEASE, Help me to help my kids!

Lesley Graham

20:22 on 16 May 2018

Our family member suffers much pain and isolation. It is time that ME was taken seriously, and more effort was made to find a cure

Gillie Whittle

19:53 on 16 May 2018

I became ill with M.E 30 years ago after being hospitalised with a viral illness. I have tried just about every type of treatment that exists, both traditional and complimentary, spending my family savings, and have not recovered. If I pace myself carefully I can get out most days, but can walk and do very little and I am in constant pain. I have had hardly any help or support from the NHS. I had to give up my career in law, and just about every activity that I used to enjoy- walking, climbing, playing badminton, being active in political and community groups. M.E affects every aspect of my life from the simple act of cooking a meal, to arranging to go to the Theatre or on holiday as I become exhausted by activity even when carefully planned. It is a scandal that there are millions of us missing our lives and that money is not being spent on proper research that would lead to treatment.

Jill Berrett

18:10 on 16 May 2018

I've been ill for 22 years. I am now housebound and struggling to walk. I cannot even qualify for PIP as the DWP struggle to accept ME. I'm in a living death. All I want is to know why my body doesn't seem to work and to either get better or improve as much as possible. Please help.

Sarah Houghton

13:25 on 16 May 2018

After 11 years of the attitude is you need to learn to live with it and one day your body will snap out of it. I've now given up expecting my GP to do anything other than the occasional blood test and prescribing a few tablets. Its a complete waste of both our time even attending. This is a very isolating illness and more investment and education is required by all medical personnel

Julie Parkes

11:40 on 16 May 2018