Living with M.E.: My Story

 

BBC ALBA DOCUMENTARY ON M.E./Chronic Fatigue Syndrome/Fybromyalgia

I recently saw a documentary on the BBC on M.E. /CFS and am interested to know what people think about it.  I’ve had M.E. /CFS for 12 years.

There are 250,000 people in the UK with M.E. /CFS and I don’t feel like we’re being listened to, taken seriously, treated with respect, or helped and supported.
This is an epidemic, yet people (often teenagers, 20’s, and 30’s) are isolated, not helped, and treated unfairly, including by medical professionals.

There are 4 problems that I’d like to change:
1. I am not/we are not spoken to or treated with respect by most medical professionals – not all.  (Treat us as equal and with respect).
2. I am not/we are not given the right tests, for old and new symptoms. (Take us seriously and give us standard testing).
3. I am not/we are not given any support or care.  (Provide services for M.E, including hospital CFS clinics and outreach departments that specialise in M.E.)
4. Lack of biomedical research.

I have had so many bad experiences over the past 12 years with Doctors (GPs, hospitals) that I am now terrified of going.  I’ve been shouted at, laughed at, spoken down to.  E.g. being shouted at by a GP in the surgery, who then followed me into the reception area and carried on shouting.
Another time, I was told aggressively that I could not be referred to hospital for tests – so I went private, and found I have a long term condition that I need medication for.
More recently, being B12 anaemic, but not finding out the test result or having B12 injections until 9 months later (by which time, I was very poorly).
I have so many other stories too, but can’t prove them.

I also am concerned that people are campaigning in an aggressive way, or to the wrong people.  This is not helping us to create change, and is also giving people with M.E. a bad name. Has anyone ever tried complaining and resolving their issues through proper medical complaints?  E.g. PALS, writing to practice or hospital managers, GMC, Health Ombudsman? (But writing with evidence and facts, rather than aggressively – we need proof).

 

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