Thanks for a passionate account of how the NHS and medical establishment is failing people with ME.
I'm very sceptical that the cross department plan will change anything for people with ME.
The critical thing that is lacking is any indication of extra funding to put these promises/plans into operation. The self appointed spokespeople for the ME community, such Action for ME and the ME Association, which are guilty of backroom deals with NICE in the past, fail to acknowledge this critical reality.
I've been in negotiations with my local and regional ICB and the bureaucrats tell me there is no money to implement the new NICE guideline. No money means all the pious words from the medical establishment and politicians are just more gas lighting.
Do I have to remind people that the report of the chief medical officer for England in 2002 still has not been implemented nor have the recommendations of the Gibson report of 2007.
The new guidelines from NICE basically take us back to 2007 before the guideline which recommend quack therapies for people with ME su h as GET.
We have to put the medication neglect and health inequalities suffered by people with ME in the context of the systemic discrimination suffered by disabled people in the UK. In April the UN Disability Committee issued a damning report which stated disabled people face systemic discrimination on multiple levels. The medical neglect of people with ME fits perfectly into that context.
Thank you , all so eloquently put. I have followed the inquest as well as I could. I want to shout, to fight, to mount campaigns and protests, but I can't because of M.E., and putting pressure on myself to do so only makes me more ill. As the Exeter R D&E is my local hospital and they clearly haven't learned enough since Maeve's death, my priority very much needs to be placed on not getting more ill, rather than campaigning. It feels as if #ThereForMe is speaking for me and the thousands like me who can't express their fear and anger, and the relief is immense. Not because we've won the battle but because a new voice is adding to the clamour for change. Thank you
ME since glandular fever aged 15 here, this being 30 years ago. I'd been presenting with gradual onset ME symptoms for the entire time yet the NHS in Cambs and Bristol never suspected, never diagnosed ME. I had to obtain this privately, then take the findings to my GP. I've personally paid for private tests which prove: mitochondria impairment/dysfunction, imbalanced immune system, heavy metal toxicity - all of which impair health and can lead to ME. My ME was gradual onset, likely originated by by the HSV and EBV viruses. I've been slowly worsening over the past 10 years, the last seven years being marked and now housebound for three years. I've recently had to give up my business of 10 years, which means being on Universal Credit, PIP and ESA. Very grateful for these, but it's an absolute pittance (not in line with minimum wage nor the cost of living rises) and because I live with my house-owning partner, there's ZERO support towards our housing cost. Due to ME I cannot live alone - I can't clean, shop, do chores etc., yet we're punished financially for living together!! Also, the more my partner earns above £1,100 per month (a ridiculously low threshold), the less Universal Credit I will get (sacrificing 55p in every £1 of UC). This is acutely cruel, punitive, counter productive. The NHS (Bristol CFS clinic) has woeful support for ME - it only offers: physio (but NOT hands on physio!!??), nutritional advice and talking therapy (afaik) - ZERO effort to understand what's going on with my biology, to call in other departments (afaik) and to practice basic medicine - helping understand my biology and build a path to recovery. NICE and NHS won't fund/supply the drug that's helping me a little - Low Dose Naltrexone - in spite of this being used globally for ME sufferers for many years and despite it seeming entirely safe at such low doses. I'd gladly sign a waiver re taking full responsibility for any side effects of LDN. LDN is low cost, but now I'm relying on benefits I can no longer afford the same private treatments, therapies, supplements, physio and such. I'll likely see a worsening of my health as a direct result of A) insufficient benefits to pay privately and B) NICE & NHS lax attitude to ME. It's terrifying. And, if I become 'severe' the NHS may well watch me die while wringing its hands. It feels like neither the welfare system nor health system are on our side. I already feel institutionalised, stuck, forgotten and neglected and I'm only three weeks into unemployment!!! I've paid NI for 20+ years, I've paid corporation tax for 10+ years. I want to work. I like working, I like earning money. I want to recover, to live my life and be a part of society again. Yet here we all are. Stuck in limbo while the professionals that we must rely on muddle the basics of medicine and obfuscate policies around the margins. Private practice is a decade ahead, NICE & NHS could learn so much about functional medicine for ME from these experts yet it is wilfully choosing not to. Please know I am massively grateful for our NHS - it was fantastic when I fractured my pelvis - but the NHS of today is in a very bad place and needs proper funding and a total overhaul of its ME strategy. Very grateful to all who are working towards this.
The media and politicians from Labour and the Tories criticise disabled people for being a burden on the finances of the government yet they are not willing to put the necessary investment into biomedical research into our illness. They want to have their cake and eat it too while we have to deal with a punitive benefits system. Shame on them and the many media outlets which demonised disabled people claiming sickness benefits.
To add, my partner is self employed, but due to arthritis only works part time most weeks. We get zero UC recognition for the support/care she provides me, as the carer's allowance only kicks in if it's 35+ hours per week (afaik, this is all new to us!). If I lived alone, I'd need some domestic support, yet my partner's provision of this service isn't valued by the state. Not only is her support not recognised, we're being penalised by being together!!! She's going to apply for PIP, as we're confident she qualifies due to the arthritis.
Thank you for writing about Maeve and shining a light on the struggles that ME patients face when it comes to accessing safe care. It’s appalling what many patients are subjected to - and I’m grateful to everyone trying to raise awareness!
Thanks for a passionate account of how the NHS and medical establishment is failing people with ME.
I'm very sceptical that the cross department plan will change anything for people with ME.
The critical thing that is lacking is any indication of extra funding to put these promises/plans into operation. The self appointed spokespeople for the ME community, such Action for ME and the ME Association, which are guilty of backroom deals with NICE in the past, fail to acknowledge this critical reality.
I've been in negotiations with my local and regional ICB and the bureaucrats tell me there is no money to implement the new NICE guideline. No money means all the pious words from the medical establishment and politicians are just more gas lighting.
Do I have to remind people that the report of the chief medical officer for England in 2002 still has not been implemented nor have the recommendations of the Gibson report of 2007.
The new guidelines from NICE basically take us back to 2007 before the guideline which recommend quack therapies for people with ME su h as GET.
We have to put the medication neglect and health inequalities suffered by people with ME in the context of the systemic discrimination suffered by disabled people in the UK. In April the UN Disability Committee issued a damning report which stated disabled people face systemic discrimination on multiple levels. The medical neglect of people with ME fits perfectly into that context.
Thank you , all so eloquently put. I have followed the inquest as well as I could. I want to shout, to fight, to mount campaigns and protests, but I can't because of M.E., and putting pressure on myself to do so only makes me more ill. As the Exeter R D&E is my local hospital and they clearly haven't learned enough since Maeve's death, my priority very much needs to be placed on not getting more ill, rather than campaigning. It feels as if #ThereForMe is speaking for me and the thousands like me who can't express their fear and anger, and the relief is immense. Not because we've won the battle but because a new voice is adding to the clamour for change. Thank you
ME since glandular fever aged 15 here, this being 30 years ago. I'd been presenting with gradual onset ME symptoms for the entire time yet the NHS in Cambs and Bristol never suspected, never diagnosed ME. I had to obtain this privately, then take the findings to my GP. I've personally paid for private tests which prove: mitochondria impairment/dysfunction, imbalanced immune system, heavy metal toxicity - all of which impair health and can lead to ME. My ME was gradual onset, likely originated by by the HSV and EBV viruses. I've been slowly worsening over the past 10 years, the last seven years being marked and now housebound for three years. I've recently had to give up my business of 10 years, which means being on Universal Credit, PIP and ESA. Very grateful for these, but it's an absolute pittance (not in line with minimum wage nor the cost of living rises) and because I live with my house-owning partner, there's ZERO support towards our housing cost. Due to ME I cannot live alone - I can't clean, shop, do chores etc., yet we're punished financially for living together!! Also, the more my partner earns above £1,100 per month (a ridiculously low threshold), the less Universal Credit I will get (sacrificing 55p in every £1 of UC). This is acutely cruel, punitive, counter productive. The NHS (Bristol CFS clinic) has woeful support for ME - it only offers: physio (but NOT hands on physio!!??), nutritional advice and talking therapy (afaik) - ZERO effort to understand what's going on with my biology, to call in other departments (afaik) and to practice basic medicine - helping understand my biology and build a path to recovery. NICE and NHS won't fund/supply the drug that's helping me a little - Low Dose Naltrexone - in spite of this being used globally for ME sufferers for many years and despite it seeming entirely safe at such low doses. I'd gladly sign a waiver re taking full responsibility for any side effects of LDN. LDN is low cost, but now I'm relying on benefits I can no longer afford the same private treatments, therapies, supplements, physio and such. I'll likely see a worsening of my health as a direct result of A) insufficient benefits to pay privately and B) NICE & NHS lax attitude to ME. It's terrifying. And, if I become 'severe' the NHS may well watch me die while wringing its hands. It feels like neither the welfare system nor health system are on our side. I already feel institutionalised, stuck, forgotten and neglected and I'm only three weeks into unemployment!!! I've paid NI for 20+ years, I've paid corporation tax for 10+ years. I want to work. I like working, I like earning money. I want to recover, to live my life and be a part of society again. Yet here we all are. Stuck in limbo while the professionals that we must rely on muddle the basics of medicine and obfuscate policies around the margins. Private practice is a decade ahead, NICE & NHS could learn so much about functional medicine for ME from these experts yet it is wilfully choosing not to. Please know I am massively grateful for our NHS - it was fantastic when I fractured my pelvis - but the NHS of today is in a very bad place and needs proper funding and a total overhaul of its ME strategy. Very grateful to all who are working towards this.
The media and politicians from Labour and the Tories criticise disabled people for being a burden on the finances of the government yet they are not willing to put the necessary investment into biomedical research into our illness. They want to have their cake and eat it too while we have to deal with a punitive benefits system. Shame on them and the many media outlets which demonised disabled people claiming sickness benefits.
To add, my partner is self employed, but due to arthritis only works part time most weeks. We get zero UC recognition for the support/care she provides me, as the carer's allowance only kicks in if it's 35+ hours per week (afaik, this is all new to us!). If I lived alone, I'd need some domestic support, yet my partner's provision of this service isn't valued by the state. Not only is her support not recognised, we're being penalised by being together!!! She's going to apply for PIP, as we're confident she qualifies due to the arthritis.
Thank you for writing about Maeve and shining a light on the struggles that ME patients face when it comes to accessing safe care. It’s appalling what many patients are subjected to - and I’m grateful to everyone trying to raise awareness!