ME: 'My daughter has ME, she went into the appointments able to walk and came out in a wheelchair'

• ME is a long-term condition that can cause debilitating pain, fatigue and post-exertional malaise.
• There are an estimated 1.3 million people in the UK with ME or ME-like symptoms.
• The NICE guidelines for ME were updated in 2021 offering new recommendations for patients.
• We speak with Michiel van Zanten who lives with ME and Janet Sylvester from ME Action whose daughter Emma has been living with ME for 12 years.

A mother has described how her daughter Emma, who has been living with ME for 12 years, went into her hospital appointments walking and came out in a wheelchair.

Janet who volunteers for ME Action was at the Scottish parliament in November calling for MSPs to support local ME services and specialist services across NHS Scotland.

Emma first became ill when she was 19-years-old, in her first year of university she developed a virus and started to experience lingering symptoms, when she first sought out help from a doctor she was advised to “not to look on the internet for any information because there was a lot of false information out there”.

Janet explains: “As her parents, we were excluded from appointments because there was a belief that in those days it was caused by some sort of childhood trauma and the parents were part of the problem. And it took us a long, long time to find the information we wanted.”

She continued: “Emma faced enormous stigmatization. Unfortunately, she was told to undertake graded exercise therapy, which made her much, much worse. This was in 2012. She went into the appointments able to walk, she came out in a wheelchair. It was a very, very hard time for all of us as a family. But the graded exercise therapy that she was offered just made her symptoms so much worse.” Janet explained that her daughter is now able to walk again but is what’s described as moderately ill.

ME is a long-term condition that can cause debilitating pain, fatigue and post-exertional malaise. It is defined in categories - mild, moderate, severe and very severe with Action for ME describing moderate as having: “reduced mobility and are restricted in all activities of daily living, although they may have peaks and troughs in their level of symptoms and ability to do activities. They have usually stopped work or education, and need rest periods, often resting in the afternoon for 1 or 2 hours. Their sleep at night is generally poor quality and disturbed.”

Michiel van Zanten knows all about the challenging symptoms, he lives with ME and outlined how they began to “slowly creep” up on him. He explained: “They started to just slowly creep into my life. The big one that triggered me trying to find out what was going on was the fatigue. I was frequently extremely tired. Tired doesn't even come close to describing it. I don't know how to describe it. It's like your battery is completely empty. Nothing works. It's like shut down.”

He said: “I think the key thing to understand and it's just so wildly different to any other illness is post-exertional malaise which means that after I exert myself whether that's physical or mental or socially or emotionally there is a backlash there is a an effect, a crash afterwards. And people think post-exertional malaise is fatigue. Well, sure, there is fatigue, but that's not even the half of it. It's a worsening of all my symptoms, and I have a lot of symptoms.

“Cognitive dysfunction, that's probably the one I hate the most, also known as brain fog. basically means that my brain stops working I can't think straight it's I can't reason my way out of a cardboard box and at the worst of times I can't even speak because my brain is too fogged, too just poisoned not working. Apart from that I have muscle aches and pains all over and my joints hurt. I have IBS, I have POTS which means that if I stand up my heart rate jumps by thirty beats per minute and so there's a whole barrage of symptoms fatigue is only one of them but all those symptoms are made worse by exertion if I over exert the next day I will crash.

“All my aches and pains will get far worse. My brain will stop working. I become light sensitive. For the worst of the crashes, I retreat to my bedroom. I've got blackout blinds everywhere because I can't stand the light. And I might be in there for three days, not being able to come out and talk to my family or anything else.”

When asked what needs to change to help patients with ME, Michiel explained: “Everything needs to change from the ground up or from the top down”, he pointed to the numbers of long Covid cases in the UK and emphasised the need to stop the spread of infections.

He then shared that he believes the UK government need to clearly reject the biopsychosocial model on which ME services had been based until the revision of the guidelines in 2021, explaining: “Their theory is that by gradually increasing how much exercise you do, you can cure yourself. And in fact, the opposite is happening when people with ME keep pushing through.” As well as calling for the government to carry out more research into ME.

He also called for NHS protocols for how to deal with people who have severe and very severe ME, referencing the case of Maeve Boothby O'Neill. The 27-year-old from Devon died at her home in Exeter in October 2021, she had attended hospital three times that year for malnutrition, an inquest has been held into her death which highlighted a number of serious failings in her care.

What is ME?

Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS), is a long-term condition that causes symptoms that affect different parts of the body. It is characterised by extreme tiredness, debilitating pain and additional symptoms related to post-exertional malaise.

There is no specific test for ME and not everyone will experience the same symptoms. It is defined as mild, moderate, severe and very severe and can have a significant impact on a person’s day to day life.

NICE updated its guidelines for ME in 2021, key changes included not offering people with ME “any therapy based on physical activity or exercise as a cure”. However, NICE advises: "It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian."

Healthcare is a devolved issue, with each region of the UK taking its own approach, in Scotland health professionals refer to the Scottish Good Practice Statement on ME/CFS from 2010.

In November, ME Action volunteers took to the Scottish parliament to ask MSPs to support their call for ME services and specialist services across NHS Scotland.

You can find out more information about ME and where to access support and advice at Action for ME or The ME Association.