James

Shortly after starting secondary school, James felt unwell on and off for a couple of months. A blood test confirmed glandular fever and advice from the GP was to have a positive attitude, as recovery from glandular fever can take up to a year.

James is a high achiever who is disinclined to miss out on anything, so he struggled into school, took part in music and drama groups, went hill-walking and skiing in the holidays, and performed really well in his exams. James continued to feel ill. His symptoms now included fatigue, muscle aches akin to flu, brain fog and poor sleep, as well as digestive symptoms (loss of appetite, nausea and bloating). The GP reassured us that he would get better given time.

… triggered Chronic Fatigue

Over a year after the onset of symptoms we went back to the doctor. The practice nurse said we were now looking at Post Viral Fatigue Syndrome and that James must rest whenever he felt ill otherwise he “could be ill with this for years.” We requested a referral to Lincolnshire’s Chronic Fatigue Syndrome service, but first the diagnosis of CFS had to be confirmed by a paediatrician. James had a number of blood tests to rule out other conditions, and we were advised to keep a detailed record of his symptoms. James started resting, and things got worse. He was now missing significant amounts of school, spending his time lying on the sofa watching films or listening to audio books. New symptoms appeared: headaches and dizziness – and then he started fainting. We took him to the out-of-hours GP, who suspected a virus or a worsening of the symptoms of chronic fatigue.

… and PoTS (Postural Tachycardia Syndrome)

By now James was fainting or near-fainting around 10-20 times a day. We researched the causes of fainting and found out about PoTS UK from the NHS website. A simple home assessment of heart rate showed the characteristic rise of over 40bpm on standing. We went back to the GP and requested a referral to a PoTS specialist in Nottingham; although apparently unaware of PoTS, he agreed to refer. Unfortunately, the earliest available appointment was nine months later. Worried and frustrated by the situation, we contacted the PoTS clinic in Sheffield and they suggested increasing fluid and salt intake. With nothing to lose, we encouraged James to drink two litres of fluids daily and gave him lots of bacon, crisps and other salty foods. Within a couple of months, the fainting stopped and the dizziness reduced dramatically, but the headaches, brain fog, muscle aches and tiredness persisted. Following a 24-hour ECG, James had a heart scan (the results of which were fine), and it was agreed that he could benefit from taking salt tablets.

… until we saw the CFS service

James had now missed a sizable chunk of his second year at secondary school. Although the fainting and dizziness were under control, he wasn’t well enough to go to school. After a long wait, we were finally seen by the CFS service. Their advice was not to rest all the time, not to nap during the day, and not to focus on symptoms. They suspected that PoTS may have presented as a result of de-conditioning from over-resting. James was encouraged to undertake daily gentle exercise (nothing strenuous), try to forget about being ill, and do ordinary things over the summer holiday. The advice to get up at the same time each day and eat within an hour of waking was designed to reset his circadian rhythm. To calm his over-active, ‘wired’ brain, he was advised to listen to classical music and get outside for walks in the countryside.

…and things got better

James spent a number of weeks on holiday in Scotland over the summer break. Instead of walking hills, he visited castles and beaches, and went for gentle walks and cycle rides. Although he was still feeling tired, his other symptoms subsided. By the end of the summer holiday James was feeling really well and, encouragingly, was sleeping well too. When we went back to the CFS clinic to agree a plan for starting back at school in September, James said he felt well enough to go in full-time. We decided on a cautious approach for the first half term, so he continued missing PE and dropped a language. To our huge relief, he was fine. We had a final conversation with the CFS service to reassure ourselves that he had recovered. They reminded us that James needs to aim for excellence rather than perfection. He should also continue to give his brain opportunities to calm down, to avoid his nervous system becoming oversensitive. With no absence and no symptoms, he went back full-time in November of Year 9. There weren’t any ill-effects when he gradually came off the salt tablets, so we cancelled the appointment in Nottingham. Although he missed a lot of school in Year 8, his current teachers said they wouldn’t have known; he’s doing really well.

Conclusions

• We are aware that CFS/ME is a complex and controversial condition with an uncertain cause, and for which there is “currently no accepted cure and no universally effective treatment” (The ME Association). 
• After the initial diagnosis of glandular fever, we believe (with hindsight) that it would have been helpful for James to reduce his activity levels and not tackle anything strenuous. We wonder whether receiving medical advice about the potential consequences of overexertion might have resulted in an earlier recovery. 
• Resting, as prescribed, when he had been ill for over a year, appeared to trigger the dramatic and worrying symptoms of PoTS. It is surprising that this condition is not more widely known about given that an estimated 25% of people with Chronic Fatigue suffer from orthostatic intolerance. A simple active stand test for anyone presenting with symptoms of CFS could be a useful tool in general practice. 
• James was ill for around 18 months before he saw the CFS service. Perhaps an earlier referral would have resulted in a swifter recovery, and might have prevented the extended period of absence from school. James felt that Lynsey Woodman, the CFS service’s Occupational Therapist, was the first medical professional he had seen who understood the condition and was able to give him (and us) effective advice to aid his recovery.