Memories Of Very Severe ME: My GP, Lost At Sea

Like many, I’m very troubled by reports on the life-threatening situation of Savannah Victora-May, a very severe ME patient at Queen Elizabeth Hospital. If you can, please consider donating to this fundraiser to cover her supplementary medical costs.

The morning after my horrendous crash1, I received a text. I shouldn’t have been using my phone, but everything had happened so suddenly, it was uncharted territory, and everyone was panicking. I peered at the dimly-lit screen under the bedcovers through one eye slit. What felt like a jolt of electricity immediately shot through me. My whole body strained, as if begging me to stop. The same happened whenever I tried to speak, even in a whisper.

The text was from my dad. It said the GP was going to call me. Given my speaking difficulties, this was worrying. I couldn’t afford to crash again the morning after the biggest one I’d ever had. It would reduce my chances of recovering and risk losing the tiny bit of function I still had. But it felt like I didn’t have much choice. I knew that refusing would worry my parents more and increase the chances of a hospital admission, which can make people with severe ME worse. I was also worried it would lead to dismissal and disbelief. Many with ME are wrongly labelled ‘difficult’ or ‘unwilling to engage’ for refusing ill-advised recommendations that would lead to crashes.

Almost no-one within the NHS knows, or believes, that ME can leave you struggling or unable to speak. I struggled with this a lot over the next 18 months. Many health professionals visited, often unannounced, expecting me to converse, and sometimes do physical exercises. I would try to answer and do as much as I could in an effort to please. This meant I frequently overdid it, and multiple times this led to a reduction in function lasting many months.

When the doctor called, I explained my situation in a hoarse whisper, using as few words as possible.

‘Do you think you need to be in hospital?’ he asked in disbelief.

I assume he was looking at his notes and seeing I had ‘fatigue’. It’s a word commonly used to describe ME, including by myself. The problem is, fatigue is a very common, mundane symptom, which is inconsistent with the high level of debility seen in many ME patients, leading to confusion and disbelief. In reality, it doesn’t feel anything like fatigue in the way an ordinary person understands it. But it’s probably the closest word there is, so we’re stuck with it for now.

I replied that hospital would make me worse.

‘Being in hospital will make you worse?’ He was incredulous, perhaps contemptuous. But it was true. The trip there, along with the light, sound, stress, and repeated interactions when I arrived, would have led to a major crash. Many hospitalised with ME report mismanagement, mistreatment, and dismissive attitudes among doctors. In some cases, this can lead to life-threatening complications, as with Savannah, who has gone weeks without food after a medication enabling her to tolerate food was withdrawn.

‘Will I have to come out and see you?’ he eventually asked in a tone of frustrated resignation.

He visited around lunchtime.

‘How long do these episodes usually last?’ he asked, kneeling by my bed. I explained that they used to last days, but now they were all lasting weeks.

He then asked if I’d be better off in a residential facility. He said that if there was a fire, I’d struggle to escape, especially as my bedroom was in the loft. I panicked and said no. The risks were similar to a hospital stay, and this sounded long-term. The last thing I wanted right then was to be somewhere unfamiliar surrounded by strangers, none of whom would understand ME.

Eventually, I really had to stop talking. ‘Doctor, can I just rest?’ I croaked.

‘Yeah, sure,’ he replied breezily. He left saying he’d return that evening to take blood samples, as he’d forgotten the equipment.

I was utterly spent. At that severity, it can take days or weeks to recover from a visit or phone call, never mind both. To prepare for the next visit, I rested as aggressively as I could. I didn’t move a single muscle from lunchtime until evening. Thankfully, it was brief; he took my bloods and left again.

At my request, my dad later called the GP and told them I wished to see a different doctor in future. Soon after, another one came to visit.

‘After reading your medical record, I think the problem here is mental, not physical,’ she said.

I assume she was referring to the fact I’d been in therapy several times. She was not the first health professional to conclude this, nor the last. Depression, anxiety, autism, catatonia, and simply ‘stress’ were all suggested at different times.

‘It’s ME,’ I protested.

‘Do you know much about ME?’

‘Yes.’

‘What do you know'?’

I could barely say a few words, so answering a question like that was impossible. I’m surprised she couldn’t see this for herself. ‘Quite a lot,’ was all I managed.

She sniggered. ‘Well, I don’t think this is ME.’

She told me she was referring me for an emergency mental health assessment. When I protested again, she said that if I didn’t consent, I could be sectioned under the Mental Health Act, so I reluctantly agreed. Afterwards, she told my dad that she thought sectioning was the last thing I needed. She was right.

Doctors are often lost at sea in these situations, lacking the knowledge, training, and resources to provide adequate care. The problems I encountered - being expected to converse more than I could, tenuous psychiatric diagnoses, and the possibility of a potentially damaging removal from home - are not rare for very severe ME patients. I’d like to write a separate post on each in the future.

Ultimately, I was in a big crash, which usually improve on their own with a few weeks of rest. What risks long-term decline is continuing to overdo it within a crash. I don’t doubt the doctors were doing what they thought was best for me. But the last thing I needed, at least in those first days and weeks, was an inundation of phone calls and visits filled with questions, and stressful talk of moving me away from my family.