Doctor consulting a patient for ME/CFS diagnosis

Thanks for believing in M.E. (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome)

My early days of an ME/CFS diagnosis

Living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is lonely at times. The worst period for me was during the first few weeks of my illness onset; after the flurry of GP visits and tests, and before my ME/CFS diagnosis.

In the beginning, I was very unwell but somewhat reassured, because everyone I saw seemed  as concerned as I was about what was going on.  I presented with a long list of
strange and unnerving symptoms. A range of tests to began to check for the obvious, followed by tests for the obscure or rare.

The shift when my blood work returned normal

All my bloodwork (excluding my liver function), returned results in the normal range. This was a relief on one level, but on another was also worrying. What on earth was going on to make me feel so busted?

Unfortunately, at this point I noticed a shift in my doctor's demeanor and approach.  He moved from considering physical drivers to psychological issues; specifically Depresssion.

I didn't blame him for this, as many of my symptoms are present with depression, however many others are not.  However, because I was so desparate for a solution, I entertained the idea that I had depression. So I started a course of anti-depressants and attended several sessions of Cognitive Behavioural Therapy (CBT). 

A doctor with experience of Myalgic Enephalomyelitis/Chronic Fatigue Syndrome

Unfortunately neither of these things worked for me, in fact the Cognitive Behavioural Therapist, asked me to return to my doctor to investigate other causes.  Ridicously, in fear of offending my doctor, I decided to seek an alternative opinion.

Through an absolute stroke of luck, I happened to book an appointment with a doctor who had knowledge of ME/CFS.  I will never forget walking into his office and being greeted with the following words, “So I’ve read your notes and I have my suspicions about what may be going on”.  I couldn't believe it! Finally someone who appeared to understand what I was going through.   He went on to explain that a family member had ME/CFS and my symptoms were very similar to theirs.  He suggested I repeat a few tests and see a neurologist to rule out Multiple Sclerosis (MS), but if all this was negative, then he'd likely confirm a ME/CFS diagnosis.  

Although I didn't know anything about ME/CFS at the time, finding this doctor felt like coming home.


My neurology workup

The neurological visit was the start of my next incredible encounter. Although my neurologist was close to  retirement, he offered to take me on as a new patient. During my appointment he listened attentively while quietly put me through my paces.  At the end of the consultation, he calmly said “I can tell that something is affecting you. You have detectable weakness on one side of your body, however I think we can rule out Multiple Sclerosis. I suspect you've had a virus that unfortunately we've been unable to detect but something is clearly altering your responses."  

Having my illness validated

I can remember feeling overwhelmed that someone could see real evidence that something was going wrong.  Obviously, I was relieved that MS was ruled out, but I was also relieved that my symptoms weren't imagined. 

But this isn't where the story ended. The neurologist requested a follow-up appointment 12 months later by which time I'd started to recover.  When I walked into his surgery I could sense something was up. He took stock and quietly he told me I was a patient who he thought may never recover!  He was suprised to see me looking so well.

I'm not sure that my neurologist understood that sharing this was actually a gift. I was so happy to have found someone so qualified, who actually believed me.  

Although my journey to a ME/CFS diagnosis began with a few speed wobbles, it ended well.  Once I had a ME/CFS diagnosis, I was hopeful and focussed. I put energy into understanding my illness and seeking support from ME/CFS resources.

At the time of writing, there is still so much that we don't know about ME/CFS and far too many patients still undiagnosed.  If we want to see this resolved, we need more research.

Instead of waiting for others to help, I've decided to launch an ME/CFS research fundraising initiative.

Introducing Coppered®ME/CFS signature jewellery

If you live with ME/CFS or care for someone who does, please visit Through sales of Coppered®, I hope to provide material donations to ME/CFS research. 100% of company profits will be donated.

I have established collaborative relationships with organisations such as Open Medicine Foundation, to ensure that funds raised go to the right people.
If you like my concept and believe in my mission, please consider supporting Coppered®.  Or if you wish to donate more directly to ME/CFS research, please visit Open Medicine Foundation here.

Sally Cox | Founder Coppered Company