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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Callum Hurley - Sheffield Telegraph Article

Hi there all,

My name is Callum Hurley, I'm a long time sufferer who is new here and it was suggested that by an admin that post the article that I recently had published in the Sheffield Telegraph for the inspection/enjoyment of you all. Please find it below.

Thanks for your time and attention

Full text reads:

"My story is a medical enigma of the sort you were never told about on ‘House MD’. I’ve been pinballed all over the medical world over the course of years, garnering theories for my illness ranging from MS to metabolic disease and even the great Lupus itself, but in truth even now nobody is sure why this has happened.

It all began in 2014 when I had graduated from Sheffield University with a degree in Biology. It was around this time that I lost my Father to a tragic accident and with hindsight it seems it was this shock which acted as the trigger for my medical deterioration - a phenomenon common to many diseases.

I began to suffer with a baffling array of illnesses and pains but despite hundreds of tests nobody could find any real hint of a reason why. My everyday life began to deteriorate as I experienced crushing fatigue and other debilitating symptoms. I was increasingly in and out of hospital with severe migraines, unstoppable vomiting, even breathing difficulties. My mind slowed down, my hands became stiff, my legs became wobbly and uncooperative. Once I had been strong and energetic but in an instant that was all gone. It is as though I one day woke up with a flu that has waxed and waned, but never gotten better. One specialist that I consulted with also worked heavily with HIV patients, and estimated to me that the average moderate-severe CFS sufferer has a comparable quality of life to that of an AIDS patient in their last two weeks of life.

The NHS has done absolutely everything within its power to help me despite the underfunding and logistical challenges it currently faces. It truly is the soul of the nation and our greatest achievement. When a patient has something distinguishably wrong the NHS functions as a well-oiled machine - funneling them to the right people and providing the right evidence-based treatments. Unfortunately, this system struggles when a patient falls ‘between the cracks’ with an indistinct illness such as mine. You find yourself endlessly juggled around departments and doctors aren’t able to offer a ready-made solution.

Eventually I was given a diagnosis of Chronic Fatigue Syndrome/Fibromyalgia, along with Functional Neurological Disorder and as pleasing as it was to have a name, anyone familiar with these illnesses will know they are in reality indistinct labels for symptoms and the research into their causes and possible treatments is severely limited. I have found some improvement with a combination of the right drugs, 'Mickel' therapy, and an experimental treatment originally developed for Parkinson’s disease sufferers, but my situation is still difficult with more struggles ahead.

Recent research in Norway with the cancer drug Rituxmiab has been particularly promising and set sufferer forums ablaze, a much-needed beacon of hope, but it’s wide availability is still a long way off for those like me for whom every day can be a struggle to survive.

An indiscernible and unexplainable condition both leaves me unable to work and makes it even more difficult to access an already difficult-to-access welfare system. My solution was crowdfunding:www.gofundme.com/helpcallumfightchronicillness, where one can donate funds to help me fight this illness, as well as read more about my story.

Above all I hope ardently that I might be able to raise awareness of this kind of illness ‘underworld’ in which I have found myself. The discourse surrounding 'forgotten' conditions such as these is growing in prominence, no longer do tabloids cruelly dismiss them as 'yuppie flu'.

The drive to attack flagship diseases like Cancer is the equivalent of efforts to conserve the big cuddly species such as the Panda or Elephant, heroic work of urgent necessity. But we are like the forgotten Bees or Beetles, not able to front charity logos but no less threatened, no less in need of help

To those like me I say this: there is always hope and even the things that you have tried before can make a real difference in the right combination. To everyone else: I simply ask, please don’t forget about us."


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