Against the background of a new NICE Clinical Guideline for ME/CFS (18 August 2021), which has the potential to improve healthcare provision for people with this condition, we have been focusing on health and social care and asking about your recent experiences, what it is you want from the NHS and social care services, and how you think current services should be improved.
During ME Awareness Week when such topics were discussed at some length, we asked if you’d like to write an anonymous open letter to the healthcare professionals you have met. We have had a good response to this request and will feature a selection of letters over the coming week.
If you’d like to take part and submit an open letter of your own, or have anything else you’d like to contribute on these subjects, then please email: Feedback@meassociation.org.uk
We will be using your feedback in a report on health and social care that will highlight good and bad experiences, your thoughts on service provision, and your suggestions for improving relations with primary and secondary care.
Dear healthcare professionals…
The past 9 years have been extremely difficult. The first few years were harsh. A nasty virus which never went! So many appointments for frightening symptoms. No answers. Told again and again by three of you that it was simply health anxiety.
‘The tests are all fine. Take these anti-depressants!’. So, I did, but they made me feel worse and I had a bad reactions to every one! You shrugged.
I was thankful for a new Locum who one day actually listened and cared. He finally suspected ME/CFS and made a referral. It was a shame that at a follow up appointment, another GP stared blankly and stated there was no such thing as ME/CFS. I was thankful when he left.
Strange migrating symptoms. Referrals and all clears. ‘The tests were fine, goodbye!’ So why was I so disabled and in such pain? The stress of the bullying physiotherapist, who clearly thought I was a time-wasting malingerer. He didn't listen. He didn't care.
He shoved printouts into my hand, ‘Do these exercises. Use graded exercise therapy!’ He didn't believe me when I said even simple movements caused me to feel broken for days. I couldn't do what he asked. He didn’t understand.
An assessment at A&E when worrying, new neurological symptoms started over a weekend… ‘She just told me she has ME/CFS!’ ….whispers, head shaking, sidelong glances, and smirks. Another ‘all in her head' patient, and I was promptly discharged. Where was the care?
‘Cognitive Behavioural Therapy and Tai Chi. They will cure her!’ Sadly, they didn’t, but I did try.
Then, a miracle! I was assigned a different GP, new to the Practice. He listened, he cared, he believed me! He knew the NHS couldn't offer a cure.
He suggested other private treatments, private testing, dietary interventions, natural medicine. New methods of detoxification and different supplements to try. He researched studies to help me.
Always polite and keen to help. Some of my symptoms improved. I felt relieved and very lucky. But then a virus in 2020. A significant regression, and new frightening symptoms. He was still supportive, suggested more testing; NHS and private, but I'm running out of money now…
I think he is still helpful and I’m now hopeful that the new worldwide interest in Long Covid will provide better investment to find the truth behind ME/CFS, so that we may all finally get access to new treatments and the help we deserve for this real and very disabling chronic illness.
The main thing I would like to say is, please, please, please, will you pay attention to your patient. We are not hypochondriacs. ME/CFS is as real as having broken bones.
Yes, we may well come across as depressed, but this is as a result of being so ill that you lose your normal lifestyle and there is no cure. We come to you knowing you cannot cure us, but you can help us achieve relief from some of the symptoms.
Remember depression or low mood is a result of the illness and not the cause. We cannot just take a pill (antidepressant) and get some exercise to recover – as was one doctors opinion. It will not just go away in a few weeks or even in six months – as was also said.
I’ve had unhelpful advice from the medical profession over the years that demonstrated a lack of understanding. Here are just a few that have stuck in my mind:
“You’ve had a baby, of course your tired!” My baby was nearly two and I was a previously fit 35-year-old who now was utterly exhausted with flu-like symptoms.
“To stop yourself from falling asleep during the day, don’t sit down. Instead rest while standing upright.”
“Get a part-time job to keep your mind active.” I couldn’t even wash up the dishes after a meal at this point.
“You need to push yourself a little harder each day to increase your activity, even on the bad days.”
I could go on, but I think I’ve made my point. I have suffered with ME for over 20 years. Not one doctor has ever said, ‘I don’t know what’s wrong with you, but I believe you, and I will try to help you’, which is what I have needed to hear.
I know that doctors can’t possibly know everything, but there is no shame in saying, ‘I don’t know’. I would respect you more if you did.
I’m willing to try almost anything to get better, but if I tell you that something you have recommended is not working, please believe me, because I know what I’m talking about.
Before ME I was a woman of above average intelligence, who worked full-time in a mentally and physically demanding job. I loved walking the dogs, swimming, and socialising with friends.
Now I have no friends, am largely housebound, and after writing this I will be too exhausted to do anything else today. The headache has already started, so I must now rest.