👏👏👏 Great to see your first Substack out. People with #ME and #severeME need commissioned, safe care within the NHS. This is an excellent campaign to work towards this 💙
Hello Karen & Emma, thank you for creating #ThereForME. We really do need the NHS to make major improvements to its care. Whilst we all know the NHS is in a bad place at the moment, under-resourced and under-funded, that should not be an excuse for not implementing the NICE Guidelines, and training Drs & Nurses appropriately in ME/CFS. There’s no excuse for treating Severe ME patients (or mistreating them) in the way that tragically happened to Maeve.
The extremely frustrating thing is - nothing has been learned, and many people with ME are still treated that way in hospital (such as Mille, Karen & Carla).
I’ve got ME/CFS (Moderate/Severe), and I dread the thought of becoming so unwell I need to be in hospital. I used to trust that I would get good and appropriate care in the NHS - but since becoming ill, I have huge mistrust issues with it. Which is terrible, as I do believe in the principle of the NHS.
Just a thought: severe ME/CFS people keep dying within NHS care. It's terrifying. Could an advocacy org be formed to help prevent avoidable deaths - e.g. working in conjunction/approval with NHS and in collaboration with the patient's private medicine records (in my own case all progress against my condition has been funded and achieved privately), carers and family. I've no idea how this would come about. I'm imagining the org containing people who are semi-medical, perhaps ex-NHS, who really understands ME care. Not sure how it would be funded etc.
Keep the ideas coming Andrew! I'm making a note of all feedback and ideas we're getting...this is very much the first step but it's brilliant to already be getting so many ideas for what comes next.
The writing from https://substack.com/@broadwaybabyto touches on this, which I've only just discovered - they're based in USA afaik, but so much of it seems applicable here.
Thank you for launching this campaign. I work for one of the NHS long Covid teams and have battled for 2.5 years to get Government and MPs to raise awareness. Luckily, our local MPs have been very supportive and have helped patients with various issues. It’s not only this that needs to be raised but employers lack of support for their employees, not willing to change policies to accommodate such things as a longer phased return. The benefits system which causes psychological distress due to the forms and the ‘assessment’, which then causes a flare up in symptoms. Financial worries of being of working age but cannot work. Not being believed, going round the houses with appointments to other services because GPs have assessed as something else. We would relish an influx of money for maintaining and expanding the Long Covid / ME team. We are yet again at discussion stage regarding funding for next year. We have argued the on cost to primary care, other specialist conditions if the service was not in place, never mind the expertise of the staff and our commitment to our patients whom we want the best possible outcome and have support along their journey since being under our care. We battle constantly for our patients, I know some have said they’d be lost without us and the support they’ve received. I’m more than happy to help support in any way I can, as would my colleagues. I have shared this with our patients so I hope some get on board. I have raised with our local MPs and ICB. I really hope there is a positive outcome for a much needed service and research into this ‘cruel’ condition.
I cannot even get a long covid diagnosis on top of the M.E. I’ve battled with since 1995. It’s all so insulting. We’ve been waiting in line for DECADES. As a person with M.E. I cannot even access a long covid clinic despite new and worsening symptoms which have been very scary. Couldn’t even make an informed decision to have the vaccine as no research to allow me to and would rather die than have SevereLongEBV reactivated in my body. Severe ME was a living death and I never want to go back there. Two covid infections and new awful symptoms including one very painful SARS infection where I had shooting stabbing pains throughout my body for 48 hours followed by new long covid symptoms, not knowing if I would die because I had no vaccine protection. No doctor cares because I already have M.E dx later written as ‘Somatoform disorder’ on my medical notes so I don’t seem to get any help. It’s an absolute scandal. They won’t remove it and only say they will hide it under CFS. Another insult A mess of ‘care’ over many years and a box full of all the ‘treatments’ I complied with including harmful GET that quite possibly permanently disabled me. I was a dance teacher and just wanted to get back to work. I keep it all as evidence to this day.
This is simultaneously heartbreaking and wonderful. Thank you so much for everything you're doing (from one who's been in the exact same position as you, as a carer for a severe ME patient) ♥️♥️
I’m being offered for the third time in around Ten years, the same program of CBT, and graded exercise. Repackaged. Didn’t work before, so not expecting positive results. I really do wish they’d learn! So frustrating! Feel like crying. Specialist wants to reduce my medication too! 😡😢
I I’ve refused this as I find it extremely insulting. Had to collate evidence for DWP PIP but explained it all to them that this is inadequate and there is still nothing new 16 years on. It’s still also under the dept of psychology too, all very damaging and abusive to patients. Don’t let them harm you or make your worse, please! I feel your frustration and anger. Enough is enough and I believe 2025 will be our year for the scandal to come out! Love and solidarity 💙🩵💙🦋🦋🦋
Welcome to substack! Always excited to see a stack dedicated to the plight of people with ME. I’ve been working on a series of posts about the hospital experience when you’re disabled and/or chronically ill - and I’ve referenced some of the people in the UK with ME who’ve lost their lives in hospital.
Have subbed and am looking forward to reading more of your work!
My wife and I have both been suffering from chronic fatigue after Covid, her for the past four years, myself for the past two. We haven't gone through anything anywhere near as bad as you and your husband but enough to gain an insight into what a cruel, life-limiting condition it is, and the near-total lack of information and support available via the NHS. I was very moved to hear your story on the radio and I sincerely hope he improves soon.
Just to echo what others have said - this sound a really valuable and necessary quest and I'm very grateful for your combined efforts. Wishing you successes and recognition. Looking forward to following along and learning from your experiences.
Thank you so much for launching this campaign. Thank you for all you have done so far for your loved ones and all you are doing for the whole community
I have rapidly worsening M E and live in Exeter, and I am terrified of ending up in the hospital which didn't save Maeve Boothby-O'Neill. I've just come across your campaign after seeing your letter re her inquest in The Observer. Thank you so much for doing this. Other organisations are great but urgency is needed because the message isn't getting through to hospital staff and consultants that this is a real illness. Research isn't the only issue here, we require a clear but flexible care process for patients with severe M.E which focuses on saving and improving their lives, rather than arguing at the foot of their bed while they starve. I echo everything that you call for.
Thank you so much for creating this fantastic campaign. I have written to both my MP and MS (Member of the Senedd) about this and it looks like I will be meeting with them soon. I am the patient representative for ME on the Women's Health Wales Coalition, currently chaired by the charity I am lucky enough to be able to work for (for a few hours a week), FTWW (Fair Treatment for the Women of Wales). I co-produced the evidence for ME alongside WAMES (The Welsh Association of ME & CFS Support), and you can find it here: https://www.ftww.org.uk/2021/wp-content/uploads/2022/05/Womens-Health-Wales-Quality-Statement-English-FINAL.pdf
I was diagnosed with ME back in 2019 and like so many, healthcare has been lacking to say the least. If it's not already on your radar, healthcare in the devolved nations often looks very different to that in England; for example here in Wales, all 7 health boards are independent to each other, and we do not have the NHS Right to Choose as patients do in England to access specialist care. There are few services here in Wales and those that are being developed risk focusing on healthy lifestyles rather than actual treatment. I have been told my only hope now is to access an Expert Patient Programme (EPP) - there is not one for ME, only fibromyalgia (which I also have), and chronic pain - both focus on mental health, exercise, and diet, and the sessions are 2.5 hours long each - so totally inappropriate for those of us with ME, but I'm told a referral to neurology isn't possible unless I do a course.
Therefore, the devolved nations will likely need sub-campaigns they can send to members of the devolved governments (many MPs respond simply saying health is devolved so they can't help, missing the point that UK Government does control so much including benefits, so they should still represent their constituents. I'd be very happy to get involved if this would be helpful - please do feel free to get in touch with me via engage@ftww.org.uk.
Thank you again for this brilliant campaign. It will make a difference!
Thanks very much for the kind words on the campaign!
Absolutely, devolved nations are very much on our radar. Emma and I are both based in England, so it’s not our area of expertise, but we’re more than happy for people to pick up our materials and run with them.
We think it’d be great to have a shared vision for what care should look like, but as you say strategies for achieving it will look different in EG Wales vs England. We have orgs from Scotland and N. Ireland supporting the campaign but so far none from Wales! I’m on holiday this week - perhaps we could chat sometime when I’m back?
This work was initially started by Sally at ME Foggy Dog in February of this year and work continues. She campaigned about this last week! I appreciate she is in the reference list, but please credit her in the main information. Thank you!
Hi Karen and Emma. Brilliant campaign you are leading. I would say I was (am?) a moderate ME/CFS patient, was housebound but not bedbound (more sofa bound) for some of the time. I’m probably at about 70% of capacity I would say. I’m very intrigued about alternative treatments. Partly because it helped and partly because some is ineffective and also most expensive I would love to exchange ideas. I want to shed a better light on what helps so we don’t have to rely on marketing messages. I have sent you an invite to Karen on Linked-in. My name is Susanne Goller. Thanks and keep up the sterling work.
👏👏👏 Great to see your first Substack out. People with #ME and #severeME need commissioned, safe care within the NHS. This is an excellent campaign to work towards this 💙
Hello Karen & Emma, thank you for creating #ThereForME. We really do need the NHS to make major improvements to its care. Whilst we all know the NHS is in a bad place at the moment, under-resourced and under-funded, that should not be an excuse for not implementing the NICE Guidelines, and training Drs & Nurses appropriately in ME/CFS. There’s no excuse for treating Severe ME patients (or mistreating them) in the way that tragically happened to Maeve.
The extremely frustrating thing is - nothing has been learned, and many people with ME are still treated that way in hospital (such as Mille, Karen & Carla).
I’ve got ME/CFS (Moderate/Severe), and I dread the thought of becoming so unwell I need to be in hospital. I used to trust that I would get good and appropriate care in the NHS - but since becoming ill, I have huge mistrust issues with it. Which is terrible, as I do believe in the principle of the NHS.
Just a thought: severe ME/CFS people keep dying within NHS care. It's terrifying. Could an advocacy org be formed to help prevent avoidable deaths - e.g. working in conjunction/approval with NHS and in collaboration with the patient's private medicine records (in my own case all progress against my condition has been funded and achieved privately), carers and family. I've no idea how this would come about. I'm imagining the org containing people who are semi-medical, perhaps ex-NHS, who really understands ME care. Not sure how it would be funded etc.
Keep the ideas coming Andrew! I'm making a note of all feedback and ideas we're getting...this is very much the first step but it's brilliant to already be getting so many ideas for what comes next.
The writing from https://substack.com/@broadwaybabyto touches on this, which I've only just discovered - they're based in USA afaik, but so much of it seems applicable here.
Thank you for launching this campaign. I work for one of the NHS long Covid teams and have battled for 2.5 years to get Government and MPs to raise awareness. Luckily, our local MPs have been very supportive and have helped patients with various issues. It’s not only this that needs to be raised but employers lack of support for their employees, not willing to change policies to accommodate such things as a longer phased return. The benefits system which causes psychological distress due to the forms and the ‘assessment’, which then causes a flare up in symptoms. Financial worries of being of working age but cannot work. Not being believed, going round the houses with appointments to other services because GPs have assessed as something else. We would relish an influx of money for maintaining and expanding the Long Covid / ME team. We are yet again at discussion stage regarding funding for next year. We have argued the on cost to primary care, other specialist conditions if the service was not in place, never mind the expertise of the staff and our commitment to our patients whom we want the best possible outcome and have support along their journey since being under our care. We battle constantly for our patients, I know some have said they’d be lost without us and the support they’ve received. I’m more than happy to help support in any way I can, as would my colleagues. I have shared this with our patients so I hope some get on board. I have raised with our local MPs and ICB. I really hope there is a positive outcome for a much needed service and research into this ‘cruel’ condition.
I cannot even get a long covid diagnosis on top of the M.E. I’ve battled with since 1995. It’s all so insulting. We’ve been waiting in line for DECADES. As a person with M.E. I cannot even access a long covid clinic despite new and worsening symptoms which have been very scary. Couldn’t even make an informed decision to have the vaccine as no research to allow me to and would rather die than have SevereLongEBV reactivated in my body. Severe ME was a living death and I never want to go back there. Two covid infections and new awful symptoms including one very painful SARS infection where I had shooting stabbing pains throughout my body for 48 hours followed by new long covid symptoms, not knowing if I would die because I had no vaccine protection. No doctor cares because I already have M.E dx later written as ‘Somatoform disorder’ on my medical notes so I don’t seem to get any help. It’s an absolute scandal. They won’t remove it and only say they will hide it under CFS. Another insult A mess of ‘care’ over many years and a box full of all the ‘treatments’ I complied with including harmful GET that quite possibly permanently disabled me. I was a dance teacher and just wanted to get back to work. I keep it all as evidence to this day.
This is simultaneously heartbreaking and wonderful. Thank you so much for everything you're doing (from one who's been in the exact same position as you, as a carer for a severe ME patient) ♥️♥️
I’m being offered for the third time in around Ten years, the same program of CBT, and graded exercise. Repackaged. Didn’t work before, so not expecting positive results. I really do wish they’d learn! So frustrating! Feel like crying. Specialist wants to reduce my medication too! 😡😢
I I’ve refused this as I find it extremely insulting. Had to collate evidence for DWP PIP but explained it all to them that this is inadequate and there is still nothing new 16 years on. It’s still also under the dept of psychology too, all very damaging and abusive to patients. Don’t let them harm you or make your worse, please! I feel your frustration and anger. Enough is enough and I believe 2025 will be our year for the scandal to come out! Love and solidarity 💙🩵💙🦋🦋🦋
Welcome to substack! Always excited to see a stack dedicated to the plight of people with ME. I’ve been working on a series of posts about the hospital experience when you’re disabled and/or chronically ill - and I’ve referenced some of the people in the UK with ME who’ve lost their lives in hospital.
Have subbed and am looking forward to reading more of your work!
I'm here for us 💙
My wife and I have both been suffering from chronic fatigue after Covid, her for the past four years, myself for the past two. We haven't gone through anything anywhere near as bad as you and your husband but enough to gain an insight into what a cruel, life-limiting condition it is, and the near-total lack of information and support available via the NHS. I was very moved to hear your story on the radio and I sincerely hope he improves soon.
Just to echo what others have said - this sound a really valuable and necessary quest and I'm very grateful for your combined efforts. Wishing you successes and recognition. Looking forward to following along and learning from your experiences.
Thank you so much for launching this campaign. Thank you for all you have done so far for your loved ones and all you are doing for the whole community
I have rapidly worsening M E and live in Exeter, and I am terrified of ending up in the hospital which didn't save Maeve Boothby-O'Neill. I've just come across your campaign after seeing your letter re her inquest in The Observer. Thank you so much for doing this. Other organisations are great but urgency is needed because the message isn't getting through to hospital staff and consultants that this is a real illness. Research isn't the only issue here, we require a clear but flexible care process for patients with severe M.E which focuses on saving and improving their lives, rather than arguing at the foot of their bed while they starve. I echo everything that you call for.
Thank you so much for creating this fantastic campaign. I have written to both my MP and MS (Member of the Senedd) about this and it looks like I will be meeting with them soon. I am the patient representative for ME on the Women's Health Wales Coalition, currently chaired by the charity I am lucky enough to be able to work for (for a few hours a week), FTWW (Fair Treatment for the Women of Wales). I co-produced the evidence for ME alongside WAMES (The Welsh Association of ME & CFS Support), and you can find it here: https://www.ftww.org.uk/2021/wp-content/uploads/2022/05/Womens-Health-Wales-Quality-Statement-English-FINAL.pdf
I was diagnosed with ME back in 2019 and like so many, healthcare has been lacking to say the least. If it's not already on your radar, healthcare in the devolved nations often looks very different to that in England; for example here in Wales, all 7 health boards are independent to each other, and we do not have the NHS Right to Choose as patients do in England to access specialist care. There are few services here in Wales and those that are being developed risk focusing on healthy lifestyles rather than actual treatment. I have been told my only hope now is to access an Expert Patient Programme (EPP) - there is not one for ME, only fibromyalgia (which I also have), and chronic pain - both focus on mental health, exercise, and diet, and the sessions are 2.5 hours long each - so totally inappropriate for those of us with ME, but I'm told a referral to neurology isn't possible unless I do a course.
Therefore, the devolved nations will likely need sub-campaigns they can send to members of the devolved governments (many MPs respond simply saying health is devolved so they can't help, missing the point that UK Government does control so much including benefits, so they should still represent their constituents. I'd be very happy to get involved if this would be helpful - please do feel free to get in touch with me via engage@ftww.org.uk.
Thank you again for this brilliant campaign. It will make a difference!
Dee Montague-Coast
Thanks very much for the kind words on the campaign!
Absolutely, devolved nations are very much on our radar. Emma and I are both based in England, so it’s not our area of expertise, but we’re more than happy for people to pick up our materials and run with them.
We think it’d be great to have a shared vision for what care should look like, but as you say strategies for achieving it will look different in EG Wales vs England. We have orgs from Scotland and N. Ireland supporting the campaign but so far none from Wales! I’m on holiday this week - perhaps we could chat sometime when I’m back?
So good you have set up ThereForME. I have LongCovid /ME. Just at beginning of diagnosis, after over 2 years and being fobbed by Gp.
This work was initially started by Sally at ME Foggy Dog in February of this year and work continues. She campaigned about this last week! I appreciate she is in the reference list, but please credit her in the main information. Thank you!
Hi Karen and Emma. Brilliant campaign you are leading. I would say I was (am?) a moderate ME/CFS patient, was housebound but not bedbound (more sofa bound) for some of the time. I’m probably at about 70% of capacity I would say. I’m very intrigued about alternative treatments. Partly because it helped and partly because some is ineffective and also most expensive I would love to exchange ideas. I want to shed a better light on what helps so we don’t have to rely on marketing messages. I have sent you an invite to Karen on Linked-in. My name is Susanne Goller. Thanks and keep up the sterling work.