Experience of Care in the NHS with ME

I love the NHS. It brought me into a career of care by working in community clinics and hospitals. I have a lot to be thankful for with the NHS and I have great admiration for those that work within it. I’m writing this with a heavy heart to show an area where it has failed to live up to expectations.

I, alongside three other members of therapists, had our careers cut short, all within the same year, due to Myalgic Encephalomyelitis (ME) . I hadn’t taken a day off sick before my virus struck and I returned to work after about a week. I didn’t feel much better, but I felt I should be feeling much better. This was the pattern of the next year but every time I tried to push on through, the fatigue pushed back harder until I was barely able to function at all.

It was scary to be incapacitated without having answers. It was even worse to have answers that were formed on stereotypes rather science. As blood tests started to come back negative it only confirmed in the doctors eyes that the problem was in my head. I was told it was due to stress and depression, I was told I was just looking for a way out of work, I was told to ignore it and just get on with life. Then came the diagnosis CFS/ME. They were far more keen to talk about my lifestyle, relationships and work than my symptoms and were reluctant to send me for further tests as these would “probably come back negative too”.  Despite never feeling depressed it was hard to challenge their conclusions without my husband being present and vouching for me. I felt ashamed of my illness and that somehow not only was this all my fault but I was also wasting everyone’s time so I stopped going. I was told it would either get better on its own or I would learn to live with it.

So, I’ve learned to live with it. The best way I’ve learnt to live with it has been connecting with others online. This changed me from being ashamed of my illness to campaigning for better understanding and provision as my own experience of ignorance and neglect was distressingly all too familiar. Don’t take my word for it, take a look online yourself. Many people with ME (#PwME) are recounting their own experiences on blogs and social media all around the world with chilling familiarity.

Not being believed and understood can be distressing but being prescribed Graded Exercise Therapy (GET) and Cognitive Behaviour Therapy (CBT) can be disastrous. These programmes work on a patients ‘false illness beliefs’. A report by the ME Association in 20015 discovered 74% of patients have reported harm from undertaking GET/CBT.

Taken from ME Association Study 2015

New research demonstrates that patients have physiological problems with their energy production and advises against prescribing exercise. (See Keller et al)In fact, the very hall mark feature of ME is post exertional malaise. It seems to me that the false illness beliefs lie with practitioners rather than patients!

“The fact is that a progressive and sometimes rather inflexible increase in physical activity, the key component to a treatment that is based on the scientifically flawed deconditioning model of ME/CFS, is just not appropriate for a significant proportion of people with ME/CFS…

If a drug treatment were causing this level of adverse reactions, then serious questions would have to be asked about its use – certainly by non-specialists.” The ME Association

I’m one of the fortunate ones with ME. I’ve had a long period of good health in between my 20 year span of ME, but trying to recover is like playing a game of snakes and ladders: just when you think you’re near the finish line, you seem to hit a long snake back to the bottom!

It really saddens me not to able to be more positive about the treatment I’ve received in the NHS. There is so much more I could add to the list of hurtful comments, attitudes and aspersions. However, I’m still passionate about all it stands for and I’m optimistic that one day things will change. It’s been 20 years since I was first diagnosed with ME/CFS and I have just found myself a GP that has been really helpful. She admits she doesn’t know much about ME and there is no specialist unit to refer me on to, but she has been willing to listen and do her own research. This is a more promising starting point. I do hope that this is the start of the change…

My NHS wish list:

  1. Believe patients with ME! There is nothing they want more than to be well and active again.
  2. Stop prescribing GET/CBT. (See StopGET.org )
  3. Better funding for biomedical research
  4. NICE guidelines to be updated taking into account new biomedical research findings and the debunked PACE trial study.
  5. Training for doctors and medical students using current research
  6. PACE trail retraction. This has harmed many patients and hampered attempts for biomedical research. Scientists in all disciplines have signed an open letter calling for it’s retraction. (See here)
  7. Specialist ME centres across the UK.
  8. Better funding for our much loved NHS!

NB: This was a rushed post as part of Experiences of Care Week #Expofcare

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4 thoughts on “Experience of Care in the NHS with ME

  1. I agree with you completely. My 20th anniversary was 14th March 2017. Remember it to this day. Worked 24 years with no real illness or time off work. Was hit by a virus and never recovered. Done everything I was told. Had a supportive doctor for 18 years of the illness until the report came out that the only chance or recovery proven was CBT. To pacify her I tried it along with a course on dealing with pain management. The result I went from being housebound with the ability to get out of the house a few hours a week to being totally housebound and worse than ever. I have deteriorated over the past two years to where I was physically in my worst days after the virus struck. It never goes away and used to always be there lurking waiting for you to overstep you activity. Now its back to 3-4 days sitting or lying in bed before I can get on my feet to go out shopping with my husband for an hour. I’m drained and when on my feet I feel the power draining out my legs. In Scotland no services and now the new doctors in the practice have no experience but won’t recognise the 18 year diagnosis of my old doctor and previous hospital diagnosis. Nothing but a disgrace! We are forgotten and I’m glad some people have the energy to speak out. best wishes x

    1. Thank you for taking the time and energy to write this. It is so appreciated when I know how limited spoons of energy can be. It’s heartbreaking to hear how long you have suffered and how the system has let you down. It’s an all too familiar story but every new story spurs me on to make sure we’re not forgotten. It really is scandalous. So, thank you again. I do wish you the very best for the future. x

  2. I am disappointed that so little progress has been made in the 35 years since I was struck down with ME. Sadly, your stories are very familiar to me.

    I suffered with this in the Sixth Form, before ME had a name. I knew nobody else with this condition, so it was very isolating. There was no internet, but friends wrote to me and Dad brought their letters home from school to cheer me up! (I think my Dad taught you English, Sarah. Remember Mr Mans?) My doctor gave up on me but Mum and Dad were fantastic: always encouraging and positive. Recovery was frustrating and I missed a year of school, but their support gave me the strength to keep going.

    Today, my immune system is pretty good, but I gradually rebuilt my life. Now, I can walk for miles, cycle with my family and spin in the gym, but I never forget those months of exhaustion and years of inexplicable fatigue. Eating healthily, listening to my body and exercising sensibly have all played their part. I have learned to listen to my body and rest, when previously I ignored it. I never take my health for granted, now. I hope you enjoy better health and find your way through this debilitating illness. Good luck x

    1. Oh my goodness, of course I remember your Dad – what a wonderful man! It doesn’t surprise me that they were fantastic when you were unwell. I’m so pleased you are now back to health. Do send him my very best wishes.

      I first suffered with ME in the mid 1990’s and know what you mean about the isolation. I did make a good recovery over the years and got back to regular fitness by doing what you did. I hope that the same will happen this time round but it’s very slow progress. At least when I had my full relapse in 2013 there was an online community which has made a world of difference. That’s probably the biggest area of tangible progress for people with ME! There is good biomedical research that is slowly coming through. This brings great cause for optimism but there’s still a long way to go in addressing harmful misinformation, attitudes and ‘treatments’.

      Thank you so much for getting in touch and your good wishes. I do hope you continue to enjoy full health and vitality! It’s certainly true that it’s not until you’ve lost something that you realise its true worth.

      My very best wishes to you and your family. x

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