By David Tuller, DrPH
Karen Hargrave is co-founder of an advocacy campaign called #ThereForME, which was launched this past summer to draw public awareness to the UK’s lack of care and treatment and to call “for an NHS [National Health Service] that’s there for people with ME and Long Covid.” The campaign has drawn significant media attention, especially in conjunction with the news coverage of the inquest into the case of Maeve Boothby O’Neill, 27, who died in 2021 of complications from ME despite having been hospitalized three times.
Hargrave is a self-described “policy nerd” with a background in the field of humanitarian relief. During the pandemic, both she and her husband developed ME after acute bouts of Covid-19. While Karen has recovered substantially, her husband remains severely disabled—bedbound, unable to tolerate solid food, unable to read or watch TV. She and Emma, another fellow carer with a severely disabled partner* [I originally wrote “husband”–I apologize for the error], bonded over their experiences and joined forces to create #ThereForME. Karen and I spoke earlier today about how the campaign got off the ground and what they hope to accomplish.
Thank you so much, Karen, for all you are doing! ❤️
It’s great to see relative newcomers to ME advocacy/campaigning taking it on in such an enthusiastic way.
Talking of the UK Government’s (and past governments’) lack or urgency in relation to ME and Long Covid, earlier this month, the UK’s Secretary of State for Health and Social Care criticized health inequalities for women in the NHS (see here -https://www.standard.co.uk/news/politics/wes-streeting-health-secretary-steve-mcqueen-nhs-women-b1194151.html), giving the gynaecological examples of menopause and endometriosis. But what he doesn’t appear to have grasped is the medically unexplained symptoms (MUS) medical agenda that has discriminated so badly against women with endometriosis, ME and lots of other gynaecological and non-gynaecological conditions, by passing womens’ symptoms off as psychosomatic. Women are most certainly treated like aliens when it comes to harder-to-diagnose symptoms. He, and other ministers and MPs, need to wake up to what has been going on in UK medicine and the NHS’s plans under previous administrations to save money by diverting predominantly female patients who were deemed to have ‘MUS’ down a mental health path rather than a physical health one. Hysteria should have died a death a long time ago but it has been alive and kicking women hard in the UK’s NHS. Our country’s economy appears to be paying the price now with the sharp rise in economic inactivity due to ill health. This travesty in UK healthcare needs to be urgently addressed, if only for the sake of the UK economy. That’s the issue that I’d like to see our politicians take on board. It’s harming a lot of men too.
Just sayin’ … (AI-Assisted Genome Studies Are Riddled with Errors).
So to make it clear what I was trying to say above – if the UK’s Secretary of State for Health and Social Care has a big problem with how women have been badly neglected in relation to endometriosis, then I think he should also have a huge issue with the sexism behind the neglect that ME patients have suffered, because it’s obvious to me that their neglect and gaslighting comes from the same place. I keep flagging this up, but I will flag it up again and again until people in positions of power take notice. Table 1 on page 6 of the JCPMH guidance on MUS produced jointly by the Royal College of Psychiatrists and the Royal College of General Practitioners (see here – https://www.slideshare.net/slideshow/guidance-for-commissioners-of-services-for-people-with-medically-unexplained-symptoms/71912851) lays out the very symptoms of endometriosis – chronic pelvic pain and painful periods and sex – as a functional somatic syndrome that doctors can expect to see in gynaecology. Two rows above those symptoms in that table we can see some of the symptoms of ME/CFS that are cast as symptoms of another supposed functional somatic syndrome that doctors might come across in the specialties of rheumatology, endocrinology, infectious diseases and in pain clinics. Doctors have been neglecting ME and endometriosis patients because they have been taught by their medical hierarchy to focus on ‘function’ rather than ‘cure’ and have been led to believe that such patients are putting health resources and funds under substantial and unnecessary strain. They’ve been taught that women are much more likely than men to suffer from MUS/functional health problems and that they may have emotional, behavioral or psychological problems that need addressing. To my mind, there has been a blatant NHS strategy to save money by diverting patients away from physical health services to cheaper mental health services (including computerized CBT, group therapy etc) instead and that strategy, as I understand it, was a central plank of the IAPT programme (now ‘NHS Talking Therapies’) that would help the service to essentially pay for itself. I’d say that women have been paying dearly for mental health patients to get the talking therapies they want or need. What has the UK’s Secretary of State for Health and Social Care got to say about that, I wonder?
I’ve just seen the UK’s Secretary of State for Work and Pensions on TV talking about economic inactivity due to ill health, with the big increase in mental health problems being discussed. Has she no awareness that many patients’ (in some cases treatable) physical health problems are being put down to ‘functional’ issues or mental health problems with them then being diverted to inappropriate mental healthcare and even on to inappropriate and potentially harmful psych drugs when therapy fails or if the waiting lists for therapy are too long? It’s really no surprise to me that so many people in the UK have mental and physical health problems now. I’d say that was highly likely to happen with physical healthcare being pitted against mental healthcare in the way that it has been over the last 2 decades or so.
This interview is both timely and so very welcome.
Today, 26th November 2024, I will travel to my local Suffolk NE Essex health board meeting, (Suffolk and Ne ESSEX Intergrated Care Board – SNEEICS) to see the ICS ME&CFS and LC Business Plan, with our co produced Specification and Pathway final up for endorsement by the NHS.
What do we want it to provide? Well, Karen in her interview, said ot simple a d better than I can!
1. SAFE CARE
2. ACCESSIBLE CARE
3. Links to research for better understanding and future treatments, we hope?
My son is 40.
He was13 when this campaign journey began
The NHS grinds exceedingly slow!
Wish us luck in SNEEICS!
The meeting will be on utube live!
This interview is both timely and so very welcome.
Today, 26th November 2024, I will travel to my local Suffolk NE Essex health board meeting, (Suffolk and Ne ESSEX Intergrated Care Board – SNEEICS) to see the ICS ME&CFS and LC Business Plan, with our co produced Specification and Pathway final up for endorsement by the NHS.
What do we want it to provide? Well, Karen in her interview, said it simple and better than I can!
1. SAFE CARE
2. ACCESSIBLE CARE
3. Links to research for better understanding and future treatments, we hope?
My son is 40.
He was13 when this campaign journey began
The NHS grinds exceedingly slow!
Wish us luck in SNEEICS!
The meeting will be on utube live!
https://suffolkandnortheastessex.icb.nhs.uk/event/icb-board-meeting-26-november-2024/
All the very best!