A year or so after I first became ill, and following constant GP visits, numerous blood tests, all of which came back negative, and months of fighting the ‘you’re just depressed’ label, I marched into my GP's surgery and demanded that something be done to help me because my life was in an horrific downward spiral. It was then that my GP at last agreed to refer me to a specialist.
A few weeks later I received a letter informing me that I had been placed on a waiting list to see an infectious diseases consultant. A few weeks after that, I received another letter providing details of the appointment, but stating that it would be in six months time.
Those six months were the longest six months of my life. The time dragged slowly by, and every day, new symptoms emerged and old ones worsened. I became more and more ill and more and more scared because I had no idea what was wrong with me, and of course I feared the worst. But eventually the day arrived. Perhaps now I would get some answers.
On arrival, a receptionist took my personal details and told me to take a seat in the waiting room. Ten minutes later, the consultant appeared and invited me to his consulting room.
He carried out numerous tests, finally diagnosing Post Viral Fatigue Syndrome (PVFS), but only because the onset of my illness could be linked to an episode of the flu.
This hospital visit was an ordeal that left me totally exhausted, and a day or so later I realised that I still had unanswered questions. So I arranged another appointment to see the same consultant.
This time, I entered his consulting room armed with my list of questions and feeling more confident than before. I sat down and explained why I was there - that I needed to understand what was wrong and that I had some questions resulting from the previous consultation.
But as I reached into my handbag to retrieve the notepad I’d prepared, he gathered his files, put them into his briefcase, and stood up as if to leave the room. Still sitting down, unable to comprehend what was happening, I asked him what he was doing. He brusquely replied that he was far too busy to answer silly questions and that I should go to the library and borrow the book ‘Living with ME’ by Dr Charles Shepherd. With this, he left the room. In tears, I followed a few seconds later and made my way home, wondering what ME had to do with PVF!
Unbeknownst to me, I had also been referred to a physiotherapist, and I received an appointment card a few days later.
On arrival at this appointment, the physiotherapist told me that she would teach me some exercises that would help. But as she watched my pathetic attempt to get to a chair and sit down, she referred to my case notes then told me that under no circumstances could she continue, and that with ME/CFS as severe as mine, anything she tried to do would only worsen my condition.
So, I finally had my diagnosis. – ME/CFS.
With no further help or understanding, and with my symptoms constantly fluctuating on an upward trend, I began to see a pattern emerge as the weeks passed slowly by. But just when I thought I’d achieved a level of insight into my condition, some new symptom would appear. So it was back to my GP and a further round of inconclusive tests until, at last, I gave up, accepting that I wasn’t going to get any more help from him.
I believe the turning point that led me to educate myself about ME/CFS came about one night at around 2.00am. I awoke and my heart was beating so fast that I felt as though my blood was racing uncontrollably around my body. I got up and tried to get to the kitchen for a glass of water, but I collapsed in the hall. Frantically using every ounce of energy I had, I managed to phone the emergency services, and an ambulance duly arrived. I had an oxygen mask on my face all the way to the hospital and my heart was beating so wildly that I thought it was coming through my chest.
On arrival, I was taken to the emergency room and, strangely, within minutes my heart rate had settled down and I felt fine! An ECG and blood test ruled out cardiovascular problems. I mentioned to the A&E doctor that I suffered from CFS, but he dismissed the fact as being irrelevant.
Half an hour later, I was discharged. While I dressed, a nurse approached me and commented on the fact that she had overheard me telling the doctor about my condition. She then asked me what Chronic Fatigue Syndrome was. I explained, and again received a dismissive reaction. I finished dressing and left. Not only did I have to battle with my condition, I also had to battle with negativity from people who should have known better. I then resolved to learn more about CFS and to try to help myself.
But nothing I learned during the following months resolved my problems.
A year or so later I was referred to a rehabilitation centre for people suffering from long term illness. In this centre I saw a several consultants, a physiotherapist, a psychiatrist and an occupational therapist.
The team were all fantastic and tried their best to help, teaching me coping techniques and providing me with aids and adaptations to make life at home a little easier. But keeping all the appointments was very tiring, and on many occasions I was too ill to attend. I was eventually discharged, my problems still unresolved.
So, for several years I had been left alone to face the negativity that surrounds CFS and to be dismissed by my GP as ‘just being depressed’. Meanwhile, my symptoms were getting worse and worse. I knew that there was something more than depression going on, but no one would listen.
I eventually demanded another appointment to see a specialist, and when the appointment day arrived, I took a new list of symptoms and handed it to him. He gave the list a cursory glance then promptly handed it back to me, muttering that these were not CFS symptoms. Before dismissing me, he went on to say that CFS was nothing more than a meaningless diagnosis of exclusion, used only when no other cause for symptoms could be found.
I looked at him in dismay then asked, “If they’re not CFS Symptoms, what are they?” He was completely disinterested, and it was then I pleaded, “If you can’t tell me what’s wrong then please refer me to someone who can.”
As a result of that, four weeks later I received yet another appointment to see an infectious diseases consultant. Following numerous further blood tests etc, he confirmed that I had Osteomalacia, Osteopenia, Secondary Hyperparathyroidism, non-epileptic absences and a severe vitamin D deficiency on top of Chronic Fatigue Syndrome!
I was then referred to an endocrinologist who prescribed a series of high strength Vitamin D injections and discharged me – I had reached the end of my NHS treatment options.
Common pitfalls -
Many GP's are reluctant to give a CFS diagnosis because they are poorly trained and inexperienced in the condition. They often believe that –
1. As they can find no physical cause for symptoms, the symptoms must have a psychological basis, and that -
2. Mental and emotional issues are indicative of an underlying psychological cause, which is certainly not always the case.
They also often have an ‘I know it all’ attitude leading to the real needs of their patients - their symptoms, concerns and fears - being improperly addressed. They also frequently seem to believe that they are in some way superior, which leads them to talk down to their patients, not treating them with the respect they deserve as equals.
Chronic Fatigue Syndrome is a complex, difficult and heterogeneous illness. Therefore, practitioners need to adopt an individual approach to each patient. They should be but often aren’t -
Empathic, attentive listeners.
Willing to adopt an equal partner approach.
In agreement that they should not express denial of the patient’s condition unless there is a genuine reason to do so, and even then that they should deal with the matter tactfully and skillfully.
Understanding of the patient’s own insights, which should always be respected regardless of all else.
Overall, if these practices were taken up by more GPs, then we as CFS sufferers would have at least one comfortable port of call - our local GP.
Sadly, that comfortable port of call rarely exists.