Thank you for this. You’ve been listening and have presented the feedback incredibly clearly for us all.
It seems that for decades ME has been organised by an outdated business model which replaced the primarily scientific plan. I understand that finance is at the root but since the late 80s business models have prevailed often presented as scientific treatments but are basically business. This has stymied innovation of all kinds. I believe this is intentional but it succeeds in simply going round in circles.
The current government’s threats about benefits have been used before by previous governments. Apart from being cruel and dangerous they are incredibly short sighted.
I’m not expressing this very well, sorry. Brain fog rules today!
Starmer and reeves have both disgracefully written in the Tory media about the need for ruthless cuts to benefits. Let's be clear benefit cuts kill people. The current labour government is stigmatising disabled people claiming benefits through it's reactionary rhetoric that we are a burden on society.
I have no faith whatsoever that the DWP will change it's murderous policies towards disabled people. I would urge people to read John Prings new book, The Department, which chronicles in forensic detail how the DWP has caused the deaths of hundreds of disabled people.
As John McDonnell MP has stated recently there needs to be a public enquiry into the actions of the DWP. I would add that the UN has severely criticised the DWP for it's repressive actions in its April 2024 report into the UK.
Unless disabled people with ME can access benefits, when they are too ill to work, then that will make their health much worse.
Sadly, the self appointed spokespersons of the ME community such as the ME Association, ME Action don't take this issue seriously.
One last thing. No one in the ME community wants to tackle the taboo issue of suicide amongst people with ME. I've interviewed scientists doing research into this area but no one wants to touch this issue which is very unhelpful.
Thank you for this clear delivery plan. Let's hope it is listened to & put into practice. Thank you for all that you do & are doing to help our voices be heard.
These all look really valuable. Thanks for your tireless efforts to promote the need for these changes across society and to demand that those at government level educate themselves on what ME really means.
Thank you so much. Can’t express what it means after decades of fruitless efforts to have such bang-on representation that listens and informs back so cogently and rapidly! Thank you for your precious energy, clarity and determination.
In my opinion, a #MECFS diagnostic blood test should be your highest priority in this delivery plan and in your advocacy.
If our disease had a 80% male population, a diagnostic test would automatically be prioritized this way.
“A diagnostic blood test for #MECFS is the highest priority because it would transform the landscape of diagnosis, treatment, and research for this debilitating condition, offering hope and improved quality of life for millions of patients worldwide.” - CEO of Open Medicine Foundation Linda Tannenbaum
I’ve had Severe ME for 30 years. Two years ago I had to go to the only major hospital in Cornwall twice within three weeks. That involved two 116 mile round trips.
Predictably, that led to “disease progression “ and I am now Very Severe - 90% disabled, housebound and bedbound. There will be no recovery.
I needed to go for endoscopies at a ‘local’ hospital. A 40 mile round trip. With the state I’m in I wouldn’t have survived the journey.
So I will never consent to hospital admission. Therefore investigations will never happen. Even a dementia ambulance is out of the question. It’s the engine vibrations and scenery flashing past at speed, plus hanging around for hours on out patient appointments that have made my ME Very Severe.
Not only are GPs totally ignorant, district nurses and social workers are similarly clueless. The One-Size-Fits-All solution to everything is harmful and useless.
The NHS is entirely culpable for numerous deaths of young women and their persistent failure to do anything to help us.
Perhaps a Class Action might achieve the specialised care we have so direly needed for decades?
M.e services should be measuring & treating OI & POTS in-house. The NICE guidelines say to get OI treatment from an expert - but where? OT fatigue Services have harmfully sidelined the medical nature of m.e, including dysautonomia, which should be at their core.
We need clearer specifics of what m.e. services should provide, with higher quality care standards. Parkinson's UK specifies exactly how Parkinson's services must be staffed, while m.e services are allowed to be a variable pick & mix. We need what the NICE guidelines DO NOT call for - physician-led medical services, a full range of support in every county &research hubs.
We deserve the same comprehensive support as other serious complex diseases, e.g.
M.E neglect is discrimination & not justified by lack of clear understanding/disease-modifying treatments as a recent NHS e-module suggests. Motor-neurone disease, with few treatments, gets support. The NHS must treat M.E seriously & monitor service provision with an oversight committee, as with long covid, until it’s satisfactory. The government should require & resource m.e services across the UK to stop commissioning groups from skimping on them.
The NHS must stop opting out of severe ME care and offer ongoing support to all. Services should be designed with the severe and complex at the heart - as envisioned in the 2002 CMO report. Severe m,e requires that knowledge, expertise, and best practice be built up and passed on & investigation, monitoring, and supported supplement / compassionate off-label drug use from experienced doctors. The NHS must cease using “Evidence-based medicine”to justify leaving some of the sickest people in the country with nothing.
60,000+ are severely affected, not just the unfortunate handful that make the news. Establishing an emergency pathway is vital but leaving M.E care as MDT “therapist only” without doctors, even if more comprehensive, is not enough. Severe m.e is not covered by a leaflet for hospital, “a care and energy support plan” at home & a visiting therapist, it requires therapy support, specialist medics & nurses in hospital/units and at home. Only then will we get good care on par with others & crucial medical interest and research ideas to try and help us.
Regarding care & support, those severe without family have had little attention. Being severely ill & not having a family to give emotional support or flexible care, to shield & speak for you, is an additional nightmare with added risks. People end up with just social care; nursing care is rarely allocated due to NHS CHC requiring complex medical needs. Informed emotional support &advocacy would help. PwME need material to help with caregivers, care home care especially is still not properly guided.
Thanks for this work on the DHSC delivery plan. It’s a relief to your engagement &representation
Apologies for this stream of consciousness & late submission
In my view, M.E was failed by the medical establishment, instead of approaching M.E similarly to Multiple Sclerosis and MND as advised by the 2002 chief medical officer, approaching it similarly to irritable bowel syndrome, which crushes no lives. Services & research were about lifestyle management, that, even with genetics research added, ignored severe needs. To reset correctly, they should ask of M.E. Proposals, would we do this for MS?
Regarding biomedical research, we need a massive effort to drive progress, make up for lost time & offer real hope to those abandoned to ruined lives. M.E needs treatment targets & facilitating funding & we must see new prioritisation of relief for the severely affected. We need investment & ambition - a program of research, not just one study and wait & see.
Arguments for urgent action are many: failure to implement the 2002 chief medical officer's Report recommending “ a program of research on nearly all aspects, including commissioned” & apply oversight; severe ME has been ignored & research funding below comparable devastating conditions; People have been left disabled without hope, many disabled by injurious bad NHS care.
The MRC’s apathy & approach must change. It has selectively listened to conservative advisors (nothing is known and only genetics is worth funding). It’s led only a small-start, cautious, linear research response, prioritising avoidance of any wastage of their research budget, yet the human and wider economic costs of m.e stalemate have been huge. As with long COVID, funders should invest &drive progress by encouraging the study of M.E from all angles. The resistance to action now may be to save face or in the hope that better early care will “design out” more severe m.e forms.
The Government must lead a marked change of direction with substantial measures & oversight. The MRC absurd position that m,e does not meet the criteria for ring-fenced funding of being urgent & unusual should be over-ridden. Government allocation of funds would increase m.e understanding significantly and Immediately by encouraging applications and interest to build a program of research. HIV, brain cancer, dementia, motor-neurone & recently long covid, have had dedicated funding, so should M.E
If the MRC & government continue to refuse RFF (and I don’t think the MEA, nor the 2021 APPG report calls for it), as “not something they normally do”, they must at least fund some things, eg “centres of excellence” (with a wider focus than genetics) & Medical services as research hubs, because lack of clinical infrastructure is a self-induced impediment to research interest & progress too. The MRC has long funded the Sjogrens Biobank and the HIV brain bank &The MEA are now suggesting emulation of the dementia platform set up & part funded by the MRC in 2014. However, this was backed by pharma investment,& m.e is not at that stage.
Thank you so much - really encouraging to know that you are putting all these points across - so useful! Really hope the government take them all on board.
Thank you for this. You’ve been listening and have presented the feedback incredibly clearly for us all.
It seems that for decades ME has been organised by an outdated business model which replaced the primarily scientific plan. I understand that finance is at the root but since the late 80s business models have prevailed often presented as scientific treatments but are basically business. This has stymied innovation of all kinds. I believe this is intentional but it succeeds in simply going round in circles.
The current government’s threats about benefits have been used before by previous governments. Apart from being cruel and dangerous they are incredibly short sighted.
I’m not expressing this very well, sorry. Brain fog rules today!
Starmer and reeves have both disgracefully written in the Tory media about the need for ruthless cuts to benefits. Let's be clear benefit cuts kill people. The current labour government is stigmatising disabled people claiming benefits through it's reactionary rhetoric that we are a burden on society.
I have no faith whatsoever that the DWP will change it's murderous policies towards disabled people. I would urge people to read John Prings new book, The Department, which chronicles in forensic detail how the DWP has caused the deaths of hundreds of disabled people.
As John McDonnell MP has stated recently there needs to be a public enquiry into the actions of the DWP. I would add that the UN has severely criticised the DWP for it's repressive actions in its April 2024 report into the UK.
Unless disabled people with ME can access benefits, when they are too ill to work, then that will make their health much worse.
Sadly, the self appointed spokespersons of the ME community such as the ME Association, ME Action don't take this issue seriously.
One last thing. No one in the ME community wants to tackle the taboo issue of suicide amongst people with ME. I've interviewed scientists doing research into this area but no one wants to touch this issue which is very unhelpful.
Thank you for this clear delivery plan. Let's hope it is listened to & put into practice. Thank you for all that you do & are doing to help our voices be heard.
These all look really valuable. Thanks for your tireless efforts to promote the need for these changes across society and to demand that those at government level educate themselves on what ME really means.
Thank you so much. Can’t express what it means after decades of fruitless efforts to have such bang-on representation that listens and informs back so cogently and rapidly! Thank you for your precious energy, clarity and determination.
Just started a new ‘course’ in Leeds. Big part of it is pacing up. It’s just GET in disguise. I hope these recommendations are taken on.
In my opinion, a #MECFS diagnostic blood test should be your highest priority in this delivery plan and in your advocacy.
If our disease had a 80% male population, a diagnostic test would automatically be prioritized this way.
“A diagnostic blood test for #MECFS is the highest priority because it would transform the landscape of diagnosis, treatment, and research for this debilitating condition, offering hope and improved quality of life for millions of patients worldwide.” - CEO of Open Medicine Foundation Linda Tannenbaum
I’ve had Severe ME for 30 years. Two years ago I had to go to the only major hospital in Cornwall twice within three weeks. That involved two 116 mile round trips.
Predictably, that led to “disease progression “ and I am now Very Severe - 90% disabled, housebound and bedbound. There will be no recovery.
I needed to go for endoscopies at a ‘local’ hospital. A 40 mile round trip. With the state I’m in I wouldn’t have survived the journey.
So I will never consent to hospital admission. Therefore investigations will never happen. Even a dementia ambulance is out of the question. It’s the engine vibrations and scenery flashing past at speed, plus hanging around for hours on out patient appointments that have made my ME Very Severe.
Not only are GPs totally ignorant, district nurses and social workers are similarly clueless. The One-Size-Fits-All solution to everything is harmful and useless.
The NHS is entirely culpable for numerous deaths of young women and their persistent failure to do anything to help us.
Perhaps a Class Action might achieve the specialised care we have so direly needed for decades?
M.e services should be measuring & treating OI & POTS in-house. The NICE guidelines say to get OI treatment from an expert - but where? OT fatigue Services have harmfully sidelined the medical nature of m.e, including dysautonomia, which should be at their core.
We need clearer specifics of what m.e. services should provide, with higher quality care standards. Parkinson's UK specifies exactly how Parkinson's services must be staffed, while m.e services are allowed to be a variable pick & mix. We need what the NICE guidelines DO NOT call for - physician-led medical services, a full range of support in every county &research hubs.
We deserve the same comprehensive support as other serious complex diseases, e.g.
For Multiple Sclerosis, the UCL service offers a dazzling array of specialist physiotherapists, neuropsychiatrists, psychologists, nurses, relapse, spasticity, diet & continence support, as well as, of course, trained Doctors. https://www.uclh.nhs.uk/our-services/find-service/neurology-and-neurosurgery/multiple-sclerosis-ms/living-ms/our-ms-services For “Chronic fatigue syndrome”, we currently get an OT at a fatigue clinic,
M.E neglect is discrimination & not justified by lack of clear understanding/disease-modifying treatments as a recent NHS e-module suggests. Motor-neurone disease, with few treatments, gets support. The NHS must treat M.E seriously & monitor service provision with an oversight committee, as with long covid, until it’s satisfactory. The government should require & resource m.e services across the UK to stop commissioning groups from skimping on them.
The NHS must stop opting out of severe ME care and offer ongoing support to all. Services should be designed with the severe and complex at the heart - as envisioned in the 2002 CMO report. Severe m,e requires that knowledge, expertise, and best practice be built up and passed on & investigation, monitoring, and supported supplement / compassionate off-label drug use from experienced doctors. The NHS must cease using “Evidence-based medicine”to justify leaving some of the sickest people in the country with nothing.
60,000+ are severely affected, not just the unfortunate handful that make the news. Establishing an emergency pathway is vital but leaving M.E care as MDT “therapist only” without doctors, even if more comprehensive, is not enough. Severe m.e is not covered by a leaflet for hospital, “a care and energy support plan” at home & a visiting therapist, it requires therapy support, specialist medics & nurses in hospital/units and at home. Only then will we get good care on par with others & crucial medical interest and research ideas to try and help us.
Regarding care & support, those severe without family have had little attention. Being severely ill & not having a family to give emotional support or flexible care, to shield & speak for you, is an additional nightmare with added risks. People end up with just social care; nursing care is rarely allocated due to NHS CHC requiring complex medical needs. Informed emotional support &advocacy would help. PwME need material to help with caregivers, care home care especially is still not properly guided.
Thanks for this work on the DHSC delivery plan. It’s a relief to your engagement &representation
Apologies for this stream of consciousness & late submission
In my view, M.E was failed by the medical establishment, instead of approaching M.E similarly to Multiple Sclerosis and MND as advised by the 2002 chief medical officer, approaching it similarly to irritable bowel syndrome, which crushes no lives. Services & research were about lifestyle management, that, even with genetics research added, ignored severe needs. To reset correctly, they should ask of M.E. Proposals, would we do this for MS?
Regarding biomedical research, we need a massive effort to drive progress, make up for lost time & offer real hope to those abandoned to ruined lives. M.E needs treatment targets & facilitating funding & we must see new prioritisation of relief for the severely affected. We need investment & ambition - a program of research, not just one study and wait & see.
Arguments for urgent action are many: failure to implement the 2002 chief medical officer's Report recommending “ a program of research on nearly all aspects, including commissioned” & apply oversight; severe ME has been ignored & research funding below comparable devastating conditions; People have been left disabled without hope, many disabled by injurious bad NHS care.
The MRC’s apathy & approach must change. It has selectively listened to conservative advisors (nothing is known and only genetics is worth funding). It’s led only a small-start, cautious, linear research response, prioritising avoidance of any wastage of their research budget, yet the human and wider economic costs of m.e stalemate have been huge. As with long COVID, funders should invest &drive progress by encouraging the study of M.E from all angles. The resistance to action now may be to save face or in the hope that better early care will “design out” more severe m.e forms.
The Government must lead a marked change of direction with substantial measures & oversight. The MRC absurd position that m,e does not meet the criteria for ring-fenced funding of being urgent & unusual should be over-ridden. Government allocation of funds would increase m.e understanding significantly and Immediately by encouraging applications and interest to build a program of research. HIV, brain cancer, dementia, motor-neurone & recently long covid, have had dedicated funding, so should M.E
If the MRC & government continue to refuse RFF (and I don’t think the MEA, nor the 2021 APPG report calls for it), as “not something they normally do”, they must at least fund some things, eg “centres of excellence” (with a wider focus than genetics) & Medical services as research hubs, because lack of clinical infrastructure is a self-induced impediment to research interest & progress too. The MRC has long funded the Sjogrens Biobank and the HIV brain bank &The MEA are now suggesting emulation of the dementia platform set up & part funded by the MRC in 2014. However, this was backed by pharma investment,& m.e is not at that stage.
you put a lot of effort into this - thank you.
:-)
Such good work. Thank you so much to all involved in both compiling and contributing 🙌
Thank you so very much!
Thank you so much - really encouraging to know that you are putting all these points across - so useful! Really hope the government take them all on board.