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“I am the care provider of myself” – Dr Shafiq, Pakistan

I was born in a small town in Pakistan. I think my illness was triggered by influenza and compounded by adverse childhood experiences. I managed to complete my medical studies when I was mild to moderately affected (at 60-70% capacity) and struggled through my career for 30 years, although I had periodic crises when it fluctuated down to 30-40%. Five years before I was due to retire at 60, I was totally burned out – every faculty dropped to 20-30%. Despite the social isolation, somehow the candle of life remains lit.

When I got ME, I suffered a total change in personality. The PEM, pain and insomnia which are part and parcel of ME engraved themselves upon me. The cognitive dysfunction and loss of creativity is a great social handicap. My vigour and zeal, all my pleasure of life, was stolen. 

But in spite of all the poor concentration due to brain fog and fatigue, I am proud that I managed to get higher medical education from the top universities of Pakistan. I hold degrees (MBBS, DCP, MPH) in Clinical Pathology and Public Health.

Doctors do not recognise PEM (Post Exertional Malaise) or our fragile sleep, widespread pain and brain fog causing aggression, anxiety and depression. Since I’m a public health professional I was able to support myself through this debilitating disease. I taught myself online, learning from the OMF, Action for ME, the ME Association and IASP (the International Association on the Study of Pain). Now I know ME more than many medical specialists. But I’ve little voice and no support.

The worst thing in Pakistan is that the medical fraternity does not recognise this multifaceted and disastrous disease. There is no data or any research paper here. One of my class fellows – a well-known rheumatologist – sat down with me and said “Shafiq! You must just exercise, take some supplements: CoQ10, duloxetine, pregabalin etc.” This guy doesn’t know the storms and flames within me.

In 1998 another class fellow psychiatrist tried every antidepressant on me to no avail and labelled me a resistant depression patient. Ultimately he administered 5 ECT shocks to me (electro-convulsive therapy). Thanks to my Doctor wife who looked after me. 

My fingers are so painful to write this, speaking is sometimes difficult and I have the feeling of internal tremors. I take some painkillers, but there is no collaborative team here to treat or advise. So I am the care provider of myself. The last few months have been very troublesome, and I begin to suspect that I am progressing into the Severe phase of this illness. I run a small lab to rehabilitate myself, but mostly it’s just bed and ME.

Thank God, I feel a little better and braver after observing Ramazan fasts. I want to give hope and help to everyone suffering with ME. We can see the Earth is still smiling through the beautiful flowers of spring. Every bird is cheerful, why not we?

I believe a cure for this disease will be on a par with the eradication of smallpox from the world. It will be too late for me, but I look forward to this light that will be there on the other end after all this bewilderment and darkness.

My 18 year old son has Osteogenesis Imperfecta type 3 (brittle bone disease). He has chronic pain and, I suspect, ME/CFS. I rehabilitate this wheelchair-bound son also. The literature shows the disease runs in families. May it not be so!

As a doctor and a #GlobalVoiceForME, I would like to say to the world’s health authorities that this is a real physical disease. Quantify its impact through epidemiology, measure the burden of this disease and make the research to rescue the Millions Missing! We should be contributing millions to the economy of our nations, not trapped in our beds.

#GlobalVoiceForME Dr Muhammad Shafiq

To complete the questions Dr Shafiq took many days and many hours to recover lying in bed.

Click here to learn more about the #GlobalVoiceForME campaign and take action for World ME Day.