As a coroner calls for better treatments and training in chronic fatigue syndrome, a mother tells of her battle for her child's symptoms to be taken seriously Paperwork shows the consultant wrote in his referral letter that “Angus’ perception of severity of his symptoms is more than they actually are” and that treatment should be from a “psychosocial point of view”. At this point he was missing days in school, spending very little time out of the house, and struggling with even basic tasks. Recent high-profile cases of the illness have sparked a renewal of interest in the illness. The actress Miranda Hart has revealed in her new book that she has been living with ME for years after contracting Lyme Disease. Last week, a coroner highlighted the lack of specialist care for patients following the death of Maeve Boothby-O’Neill. Maeve died aged 27 in 2021 from severe malnutrition, having suffered from ME for a decade. LINK
The problem with these articles they never reach the right place or used to demand change and that needs to change. There is no science that policy makers will use and we have to start to target that. in 1998 there was the same issues
Tina has been such a fantastic advocate, particularly for children with ME, so it good to read about her family’s journey. The younger someone is when ME strikes the more it takes away. I was in my mid thirties at onset, and though I now have had ME for nearly half my life I have had a full education, developed a friendship circle, owned my own home and had a degree of autonomy in my life. For a child with ME they have so little power and parents/guardians are little better off when having to deal with potentially hostile education and social service systems. Mind as I get older and develop other medical issues there is the worry of becoming prey to unsympathetic health and social care systems. This account, along with current stories about health care failing people with ME, highlights how the psychosocial model has been used to disempower people with ME and their families and by ignoring their accounts of their condition actively harmed them.
Much of the article is very good but it is a pity that Dr Kane goes off at a tangent on unproven treatments towards the end. In some ways I think it is a pity that CBT got let off the hook at NICE 2021, and was allowed to stay in as a means of 'support'. If anything the most important message, already there in 1998, is that psychosocial 'support' or 'therapy' are not treatments for ME/CFS - i.e., as far as we know do not work as such. Forget the 'curative' bit. So there is never an argument for saying 'you don't need this, you need psychosocial support'. It is perfectly possible that counsellors can play a role in recovery but we have no evidence even for that, so there is never a case for not doing something that is needed in terms of basic human dignity, relief or survival.
I have so much admiration for Tina & Angus for sharing their story. My son is about the same age as Angus. While I do my best to advocate Frank, after more than 6 years with this confounded illness, neither of us have the courage to put our story out in public. I’m always grateful when people do. In my other, now previous, roles in life I did not shy away from public advocacy. I was mulling it over today and realised that aside from the fact that health conditions are a deeply personal matter, I have to admit that the stigma of MECFS has a large part to play in my reluctance.
Thank you. It is very difficult to know if you are doing the right thing and most of the time I work on my own without the voice of reason which is always much needed. So comments on here are vital for me and even if you don't comment and just like it is worth it as it gives me the strength to carry on.
