Chronic Fatigue Syndrome...

Hello and welcome. Having been a CFS sufferer for many years, I created this website in 2006 because I wanted to communicate with fellow sufferers, sharing information and knowledge of CFS and the various related illnesses . In a short time, the website has grown way beyond my original expectations, and the CFS/ME Support Forum now has getting on for one thousand members.

So, what is CFS/ME?

Think back to the worst dose of flu you’ve ever had - not a bad cold but the real thing. I’m talking about the sort of flu that makes it almost impossible to get out of bed in the morning - sometimes it IS impossible. I’m talking about the sort of flu that leaves you totally exhausted and ill when all you’ve done is walk a few yards. I’m talking about the sort of flu that overwhelms your joints and muscles with excruciating pain, the sort that fills your head with cotton wool so that if you try to read a book, the words mingle confusingly then swim off the page, leaving you feeling dizzy and sick.

Imagine these symptoms not lasting seven or ten days as with the flu, but for year after miserable year. How would you cope?

The above is just touching on some of the symptoms of Chronic Fatigue Syndrome (CFS) Fibromyalgia, Immune Dysfunction Syndrome (CFIDS), Myalgic Encephalomyelitis (M.E.) Post Traumatic Stress Disorder (PTSD) and Post Viral Fatigue Syndrome (PVFS) - please see SYMPTOMS for a more comprehensive list. As all these ‘labels’ have very similar characteristics, for simplicity’s sake, I’ll use CFS/ME as a catch-all.

This condition is poorly diagnosed and commonly misunderstood. Many believe that it first emerged in the 1980’s when it was dismissively referred to as ‘yuppie flu’ - simply an excuse for society’s ’high flyers’ to take time off work due to ‘stress’.

But this is NOT a modern day condition at all - Florence Nightingale was a sufferer, as were many of those she cared for, along with soldiers of World War 1. Back then, the condition was treated with the same contempt as it was in the 1980’s and, by the uninformed, still is. Afflicted soldiers were accused of malingering or cowardice and sent back into battle. The lucky ones were diagnosed with shell-shock and sent home, disgraced.

Many Gulf War veterans became ill and were diagnosed with ‘Gulf War Syndrome’, which is now known as PTSD (Post Traumatic Stress Disorder). Today, I wonder just how many seriously ill people are diagnosed with hypochondria or just plain laziness and sent home to ‘pull their socks up’.

The terminology of this range of illnesses may vary and change with time, but the condition itself doesn’t. Although there’s a low to high range of severity, it has the potential to destroy its victims’ hopes and dreams. It can genuinely ruin the lives of sufferers, carers and families. It’s an insidious, evil illness.

It is estimated that there are around a quarter of a million CFS/ME sufferers in the UK alone. CFS/ME can affect men, women and children of any age, but commonly strikes between ages twenty to forty.

To-date, what causes CFS/ME is unknown, though viruses like flu or glandular fever are often involved as triggers, as are traumas such as a major surgical operation.

Other possible triggers are –

Often though, it materializes for no apparent reason.

Thankfully, CFS/ME is taken a little more seriously these days, but, sadly, it is still poorly understood. This means that sufferers still have to deal with disbelief and the many myths that surround the illness. They are often thought of as being ‘merely tired’, but the fatigue felt by a healthy person following a busy day doesn’t come remotely close to the profound exhaustion that CFS/ME sufferers are forced to contend with day after day after day as they search for a non-existent ‘magic pill’ that they hope will help them.

Also, sufferers are often subjected to the belief that they’re ‘just depressed’, but mental health issues are only rarely noted pre CFS/ME onset.

I had been suffering from CFS/ME for a long time and had been subjected to the abuses mentioned above, but if I avoided the things I struggled with, I coped. However, following the relapse, I felt that if I hid away from the world, the world would know nothing of my illness, and then I’d be safe from accusation. If I lived in a world of unreality, perhaps I’d be well in that world. I lived this life for many months, but eventually accepted my problems for what they were, realising that until I did, they could never be resolved.

The fact is that we as sufferers are more or less abandoned by the system, dismissed by parts of the NHS as being lazy or, worse, head-cases needing to pull themselves together. This leads us naturally to believe that we face a lifetime of physical and mental torture, disgracefully ignored by a government that chooses not to fund the necessary research that might lead to a worthwhile treatment – even a cure. Instead, we’re often casually diagnosed as depressives and prescribed anti-depressants that make us even more ill, adding further to our long list of symptoms.

As I sit here writing this, I wonder just what century we’re in, and just how long we’ll have to wait before we’re treated in the way we deserve – as seriously ill people needing help. Perhaps, the day we’re waiting for isn’t too far away. I hope that’s the case.

When I was first diagnosed with CFS/ME, I, like many other CFS/ME sufferers, searched for answers, struggling to come to terms with what was happening to me. But the medical terminology used in the information based websites I visited defeated me. I didn’t understand what was being said and I couldn’t find a comprehensive list of the symptoms I was suffering. Horrifyingly, though, the one phrase that kept cropping up was - ‘CFS/ME has no known Cure.’

It was then that I determined to create a personalised website, one that could bring sufferers together for real help, information and genuine support. With the invaluable help of the website’s Chronic Fatigue Support Team, I achieved my dream, and you are now reading the front page of that website.

I feel that it’s very helpful if carers, family and friends can try to understand just how CFS sufferers must feel. Apart from feeling dreadful, they have been through months if not years of uncertainty due to the unsatisfactory diagnosis methodology - see GETTING DIAGNOSED -and are frightened, lost and, in their minds, alone. This can lead to high anxiety which in turn can lead to other issues like isolating themselves, agoraphobia and avoidance of anything that worsens symptoms or puts them in perceived danger. Do please try to imagine how you would feel under those circumstances.

The Chronic Fatigue Support Team have created a video which is currently being aired on You Tube, which hopefully, after watching, will allow others to understand what we as sufferers need to contend with daily. For those who wish to view this video, simply click on the following link- Chronic Fatigue Syndrome Support Uk.

Here, I have tried to convey what it’s like to live with the symptoms of CFS/ME on a daily basis, how it destroys hopes and dreams, and what it’s like contending with the negativity and labeling that dogs this illness. At least to some extent, I hope that I have opened a window of understanding for fellow sufferers and carers, and perhaps provided some education for those who are uninformed, and therefore unable to grasp the true extent of this illness. With the addition of the Chronic Fatigue Syndrome Support Uk Group on Facebook the CFS/ME Support Forum and members only chat-room (membership is free), I hope that I have created a safe haven for sufferers and carers alike.

To some, the name ‘Chronic Fatigue Syndrome’ trivializes the condition so that it is perceived as ‘just being tired’, and this prevents it from being taken seriously as a major health issue, hence the lack of research.

Due to lack of research funding, along with the belief in some influential quarters that this is not a ‘Real’ Illness, there is still no known cure for CFS/ME. But there IS some hope.

I have recently come across a database of archived research documents into the cause of CFS dating back to 1956- ME Research Uk and In 2009 The Whittemore Peterson Institute published a report on their findings relating to a link between Chronic Fatigue Syndrome and Xenotropic Murine Leukemia - the XMRV virus originally found in mice. Unfortunately, several other attempts to duplicate this research have failed to find a connection.

However, this research is ongoing, so there is at least a possibility that future findings might one day soon help unravel the mystery that surrounds CFS/ME, eventually resulting in a worthwhile treatment. Hopefully, this research won’t falter and be placed in the database with all that has gone before it.

I’m an optimist – I believe that one day I, along with all other sufferers, will be well again, that, one day, we’ll look back on our current existence as a nightmare from which we have finally awoken.