Milly’s chronic fatigue illness, outlined by her father, Patrick Barkham, is heartbreaking (As my daughter got sicker and sicker, our quest for answers dragged on. How did we all miss the bacteria taking over her body?, 28, September). Patrick says he feels guilty, but he is not to blame: the NHS has failed them.
In the absence of clear explanations and effective solutions, it is entirely understandable that families may turn to a variety of for-profit, fringe medicine options. While Patrick’s faith and optimism may indeed help Milly recover, there is no reliable evidence linking a chronic Borrelia infection to her symptoms; and the effectiveness of long-term antibiotics has not been demonstrated.
Milly’s exhaustion is typical of a group of conditions known as “persistent physical symptoms”. They arise when biological defence systems, evolved to keep us safe, go awry. Approaches that work for many are based on knowledge of how the brain, thoughts, feelings and activities interact. This knowledge is explained to patients in a dialogue, relating stressors to brain-generated danger signals; and this becomes integral to a negotiated, bespoke rehabilitation plan. This approach has been shown to be effective, including in two well-conducted, recent trials from Norway, one for people with the post-Covid condition, and one for people with “medically unexplained symptoms”.
Unfortunately, it seems that Milly’s mind-body approach was implemented in a suboptimal way. This led her to feel responsible for her symptoms, rather than understand that they arise from the body’s natural responses. Such feelings of guilt can hinder recovery, and should have been carefully addressed.
Prof Paul Garner Liverpool School of Tropical Medicine
Dr Maria Pedersen Oslo University Hospital and University of Oslo
Dr Alastair Miller Former lead, neurological infection service, Liverpool Royal University Hospital
It was heartbreaking to read Patrick Barkham’s account of his daughter’s illness, initially diagnosed as ME/CFS (chronic fatigue syndrome), later found to be Lyme disease. I was diagnosed with ME/CFS in 2019 and know too well the challenges faced with medical gaslighting and ineffective treatment options. However, the article states that they “were given the usual advice about pacing – gradually increasing exercise – which is challenged by some ME patient groups”. This conflates pacing (a recognised and helpful energy-management principle) with graded exercise therapy (aimed at gradually increasing a patient’s physical activity limits).
The latter is a flawed treatment principle that is no longer part of the National Institute for Health and Care Excellence treatment guidelines due to there being no proven clinical evidence of benefit, and – worse – patients frequently reported that it caused them harm.
Tom Pond
London
I was intrigued that Patrick Barkham acknowledged his interest in nature as a cure in his writing. I grew up in Canada during a spate of the West Nile virus, meaning we were aware of mosquito bites being a serious health threat. As an adult I contracted chikungunya while living in Cambodia, a debilitating mosquito-borne disease that mimics rheumatoid arthritis.
At present, I live on the Oxford canal, which thrums with mosquitoes at dusk. As the UK gets warmer, we are more likely to see incursions of mosquitoes, including those carrying tropical diseases. Ticks are also increasing. Alongside this we have a new culture of rewilding green spaces, but I never hear any consideration of the changing climate that means this could eventually become a medical risk.
Tropical diseases carried by insects have historically been ignored by medical research. However, consideration of how we can let biodiversity thrive while also considering what interactions with invertebrates might mean for our health is crucial.
Allison DeVries
Kidlington, Oxfordshire
Have an opinion on anything you’ve read in the Guardian today? Please email us your letter and it will be considered for publication in our letters section.
