Problems getting a diagnosis and support by Smita Dutta.
I saw your report about the All-Party Parliamentary Group on M.E. on Google and I relate to it. I have suffered from M.E. for almost 9 years.
Until now nobody has given me a clear diagnosis stating that I have myalgic encephalopathy, or guided me through any support to help me live as normal a life as possible.
I see my GP regularly, every time with a new complaint, sometimes I go for my neck shoulder and back pain and they will prescribe me some pain killers or voltarol gel, sometimes I go complaining about insomnia, and they will give me some sedative to help me sleep… And this been the situation until recently.
The GP’s I have seen do not seem to have been given any training to recognise a patient with M.E. and refer them to the right place. They treat everyone based on the symptoms rather than the whole illness itself.
Because of this people like me suffer and are still suffering. Although I live in a developed country like the United Kingdom, it feels like I am living in a place where no one knows about M.E., where even GPs don’t know about this condition.
How can we expect our family members to understand it? Everything is interconnected and the cycle continues and ultimately the person suffering is us, not the other people who are healthy.
I keep reading about M.E. on Google and have learned so much about it. Two years ago, I asked my GP to refer me to a specialist and they did. The consultant said she couldn’t give an accurate diagnosis as I have symptoms of both M.E. and chronic pain syndrome… So, she referred me for physiotherapy.
Physiotherapy helped me a bit for my sharp neck pain, but the pain didn’t go away. After a year I had a review appointment with another consultant, and she said she would refer me to the local ME/CFS specialist service.
But my GP didn’t refer me, even though the letter was received from the consultant. Again, after exploring Google I discovered the service and requested they send a form to my GP and they finally did. But then I received a letter from the clinic saying that there will be a long wait because of the coronavirus situation.
Now my questions are, why hasn’t an effective treatment for this condition be found? Is it because we don’t have funding or because M.E. is not given any importance? And, when will scientists ever be able to find a cure?
Whatever the answers, people like me are in pain every moment of every day and are desperate. We will die without getting a chance to live a normal life.
But people who don’t have M.E. will never understand and feel the pain and suffering we experience. It’s like a man who can’t feel the discomfort and pain of a women’s monthly period as they don’t have to go through it.
People like me are craving pain-free days and we are praying every moment so that doctors or scientists can find a cure, but unless they can be made to understand, how will they appreciate the urgent need for this vital work to be done? For them, M.E. is just another illness in a long list.
I do feel some hope. Researchers are perhaps closer now than before to discovering the causes of M.E. as they examine things at the cellular level. But we need more funding and people need to appreciate just how bad this illness can be.
I feel we humans should do more research in the field of medical science rather than keep investing as much in technology and weapons of war. If we had been doing so we might also have found a coronavirus vaccine much sooner and we could have prevented the pandemic.
Technological advances and expenditure on war are not going to help us much in the face of global crises like that of the coronavirus or the increasing prevalence of M.E.
Only increased research funding and advances in medical science offer the promise of life.
ME Awareness Week Monday 11th – Sunday 17th May 2020
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