Podcast Transcript – The Chronic Collaboration: Emergency Protest

Transcript of ‘The Chronic Collaboration: Emergency Protest’ – FogPod podcast episode.

Listen here – Patreon, Buzzsprout, or Spotify.

More info about the campaign – The Canary article


SUMMARY (for those who can’t read the full transcript)

Intro to the show.
This podcast/blog is about the Chronic Collaboration’s #DontLetMEDie protest in Westminster on 8th March 2023. Co-Founders of The Chronic Collaboration, Nicola and Steve, are talking to Sally from M.E Foggy Dog.
Three demands.
The perfect storm
NHS on its knees, psychologisation of Long COVID (half meet M.E/C.F.S criteria), ‘economically inactive’ rhetoric and the push to get chronically sick people back to work, NHS strike action, and the seeming uptick of severe patients in NHS hospitals being neglected.
The Health and Social Care Select Committee and other Government-linked Departments have power to act yet are choosing not to.
Sorting these types of issues out IS THEIR JOB yet are refusing to investigate or intervene.
Tackling human rights abuses in the UK.
We discussed the work that Sally has undertaken with Stripy Lightbulb CIC, both in collaboration with the ME/CFS Foundation South Africa when contacting the WHO and UN, but also independently when (unsuccessfully) asking the Health and Social Care Select Committee and Joint Select Committee on Human Rights to conduct inquiries.
Letting the government dig itself into a hole.
We need to keep asking questions of Government even though we are realistic about it not leading to immediate change.
How can people who can’t attend protest get involved?

Lots of people won’t be able to be there in person. So we are asking them to send us a photo of themselves,  it can be anonymous, with a brief description of who they are, how long they’ve been living with M.E, or the chronic condition that they’re living with. We will show them during our live stream. And also, it’s incredibly important, what made our campaign last time so successful, was the fact that there was so much support online. We had global support. It wasn’t just from the UK, this was global support. Our hashtag this time is going to be #DontLetMEDie. We really do need everybody who cannot attend to (if they are able to) continuously put out that hashtag whilst we are doing the protest.

Transcript of Podcast Episode

M.E Foggy Dog 0:08
Hello, welcome to today’s episode of FogPod. Today I’m talking to Nicola Jeffery and Steve topple who are the co founders of The Chronic Collaboration. I’ll let them introduce themselves and explain to you what The Chronic Collaboration is and what they do. Okay, Nic, over to you.

Nicola (Nic) 0:26
Hello, my name is Nicola Jeffrey and I’m with my partner and also full time carer, have created a collaboration called The Chronic Collaboration. Basically, what we’re looking to do is to try and connect all of the different chronic illnesses, chronic disabilities, all of the different conditions that are not funded the way that they should be, quite often psychologized under medicine, and to finally get this recognised and get the people who have unfortunately had to live with this, the recognition and the support, and the justice, that they deserve and that they need.

Steve 1:12
Yep. Hi, I’m Steve Topple. I’m a journalist for The Canary I’ve written for The Independent and for other, more left wing, outlets like the Morning Star, New Internationalist, I’ve been on the BBC before, but I’m also a full time carer for Nicola, as she said. My interest in chronic illness started actually well before Nicola got a lot of her diagnoses, and I was quite active in the disability community and doing a lot of work around the erosion of their rights. And then yeah, chronic illness, obviously came into that as well. Why did we start the collaboration? Well, we were, we were frustrated, firstly, with, unfortunately, sometimes the big charities approach to the situation in this country for chronically ill people. In terms of that it was it was all very nice, it was all very friendly and polite in terms of letter writing, and petitions. However, mine and Nicola’s background is activism. Nic has always been an activist. And we’re used to kind of go out marching and raising our fists and protesting and holding banners and occupying buildings. And so somethings slightly more, how can I put it? Maybe direct than writing petitions and so on and so forth, that we’re used to doing that kind of stuff. However, obviously, we understood that in the chronic illness community for a lot, if not the majority of people living with chronic illnesses, that kind of protest isn’t possible. So therefore, we thought it necessary to start something which could facilitate that protest on their behalf for them with them. Hence, why we did our first protest, which was in September 2021, some of you may remember outside NICE, National Institute for Clinical Excellence, over those damned guidelines for the months of the months of, I suppose trauma surrounding that, and getting nice to publish the guidelines in some sort of half acceptable format. So we organised the protests then and the point of it was, it was it was very clear, and we hope it hope it did work. That while some of us were on the grounds that there was a big online interaction with it, and we tried to make it as accessible as possible live streaming it, we asked for people’s photos, so we could show them on the day so that then they were in some way represented outside NICE. And it went, went as well as it could have gone. So that was kind of part of why we formed the collaboration because we have a slightly different view and a slightly different approach to activism within the chronic illness community. But also as Nicola said, there’s so much crossover in these conditions, you know, you see kind of figures bandied around and, and qualitative, I suppose, evidence for example of, there’s that figure of about 50% of people with their meal also live within Ehler Danlos Syndrome, for example, and now we’ve got the 50% of people with long COVID would be categorised as M.E, and so on and so forth. And there’s all this crossover between chronic illnesses and yet still research and recognition and the narrative surrounding this is still very much lagging behind I think, and so again, that was that’s a long term goal of what we’re trying to do here is to bring these conditions and the people living with them together to try and move that forward slightly and as Nicola was saying before we started recording about how the NHS treats chronic illness as well. I mean, it’s it’s, it’s, it’s disastrous the majority of time for chronically ill people, you know that the, the way the NHS operates hasn’t changed really, since its inception, you’re supposed to go in unwell on the little factory conveyor belt and come out the other end either dead or better. And there’s still there’s still not the service in any way shape or form for chronically ill people. And the notion that we’ll some people don’t actually get better. And so that’s kind of another intersection with why we did it with the fact that, as we’re going to discuss later on, and has has been shown this year alone, how, you know, catastrophic the NHS is for chronically ill people. There was a multitude of reasons why we started and that’s kind of something isn’t it?

M.E Foggy Dog 5:46
That’s a really good explanation. Thank you, because I didn’t know everything that you want to achieve with The Chronic Collaboration. So that’s really interesting. Thank you. So the reason we are doing this podcast today is last Wednesday, during M.E awareness hour, you launched your latest campaign, and the hashtag for that campaign is #DontLetMEDie. And part of that campaign is three demands. So I’d like you to tell me what those demands are and what the campaign involves.

Nicola (Nic) 6:19
Sure. Okay. So we have three demands to #DontLetMEDie. Our first demand is that the APPG on M.E urgently convene a meeting to draw up advice to MPs on how to intervene on behalf of severe M.E patients. Our second demand is that the Health and Social Care Select Committee urgently conducts an inquiry into the treatment by the NHS of all post viral illnesses including long COVID and MECFS. and their associated conditions for example PoTS, Gastroparesis, cranial cervical instability, etc. And our third would be that the Department of Health and Social Care urgently conducts a review into the NHS England Health, Health Education England and General Medical Council’s implementation of NICE’s guidelines on MECFS. Particularly regarding severe M.E.

M.E Foggy Dog 7:20
All very important.

Steve 7:15
So what happened was, we were kind of set. The backstory to this Sally, I suppose is that everyone saw the news about Cara’s sad and untimely death, as well as Anna, as well as Sarah since Christmas. Then it came to light about Sami Berry, who’s severely unwell in Berkshire, an NHS Trust in Berkshire. And then it came to light about Alice Barrett, severely unwell in the same hospital that Maeve died in. And that seems to me, you know, it may just be it’s extremely subjective. But there seems to be this uptick suddenly, in people living with M.E being in life threatening situations, or, you know, worst case scenario, these people are dying. And this all seems to come at once and me and Nicola are acutely aware, as most people living with chronic illnesses like M.E, and Ehler Danlos Syndrome, are acutely aware that quite often you are, you know, a couple of steps away from being in that situation. And it really hits home.

Nicola (Nic) 8:39
You know, it felt incredibly personal seeing these situations and seeing these ladies, I don’t know if people know what I’ve experienced over the years. But I was, I was incredibly lucky to meet Steve when I did. And I mean, I’d already been sectioned for nine days, I had to fight for a tribunal. And I was discharged five minutes before my tribunal and I then spent the next two years fighting for residency and full custody of my son and this was under a Fibromyalgia diagnosis. It wasn’t until, and that was in my early 20s, it wasn’t until my 30s when I met Steve, we were able to campaign. It’s typical it’s one of them old sayings, it’s not what you know, it’s who you know, I’d known for years that there was something wrong, I’d continuously been trying to get somewhere with it. But I’d experienced nothing but medical misogyny, to the point where it was almost accused that I was then putting my illness on my son because I noticed that my son wasn’t well and there was something going on there as well. And as I say we It wasn’t until meeting Steve, and he put out a Crowdfunder, so that we were able to finally see some private specialists and finally get some answers. And when I was in my early 30s I was finally diagnosed, I had Ehlers Danlos Syndrome. I also had AAI, I had CCI so Atlantoaxial Instability and cranial cervical instabilities, please excuse me, if I pronounced any of this wrong, I am not qualified in medicine, I’m just a patient. But the point being I was living with so many other different diagnosis is I was living with gastroparesis, which was becoming very severe, I was living with PoTS, I was also experiencing seizures, which up until that point, I was told must have been a childhood trauma that I didn’t remember. And if I tried to, if I had tried to pursue that any further at the time, I was getting letters to be sent to Maudsley in Kings. So I would have, again, been effectively sectioned. So, and the point being, these ladies, because of the community, they do have the support, we have all been making as much noise as possible about this, but there are so many other people that don’t, because there are so many people that you know, they don’t have the family support, they don’t have anybody, they might not even have internet access. And who’s speaking up for them? And it’s also as well, we’re incredibly lucky that we’ve all researched this. We’ve all had, for whatever reason, the instinct to want to look into this further, there are so many other people that have been given other diagnosed and they they’ve taken it on board, they don’t know any different, they don’t even realise what else could actually be going on in their body and what they’re living with, because they’ve effectively just been dismissed. And I felt really strongly that I was very lucky to have had the support that I did, and to get the answers that I did. But there are so many people that don’t get that opportunity. And like I say, you know, it’s not what you know, it’s who you know. And I really feel for the people that don’t ever get to the, you know, the chance that I did to actually get some answers. And we have to do something about this. This is like the modern day witch trials. It really is. And you know, I don’t really know how else to describe it.

M.E Foggy Dog 12:16
Yeah, and I I agree with absolutely everything that you just said. While all the social media campaigning was going on around Alice, there were three other patients tweeting that they’ve just gone into hospital, and that they weren’t in a side room, they had no control over noise or light. Obviously, they were wearing their eye mask and ear defenders and everything. Other people were talking about recently being sectioned, and don’t het me wrong, as an advocate, it’s something that I’ve been aware of. But as Steve said, it seems to ramped up to a whole new level at the moment, and I have no explanation for it.

Nicola (Nic) 12:53
I think I can actually answer that. I honestly believe that this massive, as you say, sort of push now on on the psychologization, I think it ties into long COVID. I really do. I think it ties into the fact that there are now in the population, so many more people living with post viral conditions. There is now so much media attention. And I think it’s to try and continue the ideology so that it never effectively changes because effectively, I can only imagine how much it would cost any government to actually properly fund this, to properly support people and give them what they actually need. And, you know, we’ve unfortunately, the mindset of the government we’ve had for the last, what, 10-12 years now, it’s been crazy, and they’re not looking to help people in the way that is needed. And I think effectively, it’s a cover up. And I think it has been for years. And you know, there’s different elements, there’s different people involved. There’s many doctors that we’ve met along the way, both on the NHS and privately who are completely aware of this, but I think professionally don’t want to rock the boat because they’re scared of their own position. They’re scared of their own jobs. And this is why I feel that so many people need to be coming together and working as a collaboration on this, as opposed to individual campaigns or individual charities because this isn’t just about patients. This is also about doctors, there were a lot of doctors that are incredibly frustrated that they can’t treat patients and they you know, they signed that initial bit of paper, first do no harm. And they’re having to you know, still follow orders. It’s, it’s quite, it’s scary, but you know, we’ve got to do something on this and that’s kind of what we’re trying to do.

Steve 15:01
Yeah, exactly. I mean, look, the thing is, I think there’s, there’s kind of this perfect storm, at the minute of circumstances which are coming together, and why we’re seeing, why it feels like there’s this uptick in people living with M.E and other chronic illnesses being effectively severely neglected and mistreated to the point where, you know, they’re seriously unwell or dying and it’s a combination of things. You know, we see the headlines all the time the NHS is under strain, NHS is underfunded, medical professionals on, quite rightly, on strike overpay. So we have the NHS, which is collapsing under the weight of decades of mismanagement, and underfunding and, you know, nefarious, almost counter reforms by successive governments, you have the situation with the Department for Work and Pensions and cabinet offices focus on economically inactive people, because we have this sudden surge in people not working or not looking for work. Since the pandemic be it’s that older people have decided to retire early and not going to work. Or alternatively, you have this increase in hundreds of 1000s of people now, not working and not looking for work because they are chronically ill. So you’ve got health service, which is under strain, you’ve got a inherently corporate capitalist government, which is fretting about the fact that not so many people are working, and we’ve got to pay for these people not to work. And all these different factors coupled with the fact that this was inherently and historically always an issue anyway. This is a new, the idea that well, what are chronically ill people doing not working? Why aren’t you working? You know why. The PACE trial was part-funded by the Department of Work and Pensions, we know this. But it’s just it’s now hitting a kind of crisis point. And I think that’s part of the reason why we’re seeing what we’re seeing. And also, NICE guidelines intersect with this, which we’re going to go on to later. But those are the guidelines that were finally published in November 2021. When no way adequate, I said this at the time I wrote this at the time, it’s not going to change anything. And it’s becoming very clear that even the fundamentals of these guidelines are still not being implemented by medical professionals, which ties into part of our demands. And we have we have this perfect storm now. And you’re right, there are three other people. There’s one who we’re going to speak to who we’ve seen on social media, I’ve had another report privately of someone in a similar situation, which had we actually it hasn’t been put out on social media. So it could be four other women, actually, in exactly the same situation. And yeah, it’s it’s a multitude of issues, all coming together at the minute. And these three demands, as I said, they didn’t just come out of nowhere. As such, we were like, Okay, well, you can go and harass the medical professionals on the front line, is that going to change anything? Not really, that’s kind of we almost felt that was also slightly overstepping on the family’s kind of almost privacy and what the family are trying to do. That’s not our place to go and protest outside the hospital is probably quite inappropriate under the circumstances. So okay, let’s look at kind of mechanisms and systems of government in this country. And what can we do? And don’t get me wrong? We’re under no illusions, we think this is going to happen. And that’s kind of not the point. What can we do to highlight the fact that there are organisations and bodies within this country who should be doing something about this, however, are not doing their jobs in any way, shape, or form? And that’s how we came up with these three demands. So the first one,

if anyone’s seen the All Party Parliamentary Group on M.E, please do let us know because it hasn’t convened for how many months now? Was it? 18 months? I think that 18 months, it was logged, they had a general meeting. They haven’t declared their finances and who knows where the money is coming from. Anyway, I’m sure you know, I’m sure they’re doing wonderful work behind the scenes that we don’t know about. We’re just not privy to, are we? Anyway, the All Party Parliamentary Group on M.E, that’s the first thing that is there to discuss these issues and it is categorically not doing its job at the minute. You know, we’ve literally come out of the biggest public health crisis in 100 years with a surge in chronically ill people with a post viral illness. We have the APPG on long COVID and yet the APPG on M.E, nothing, silence for the best part of a year – 18 months. So that’s the first demand that is there for that purpose, get your backsides out of whatever else you’re doing, convene a meeting, and you need to work out how politicians can intervene on behalf of M.E patients because that is one…. Do you know Sally does kind of work like this whenever a local politician, an MP, gets involved with a constituent’s case, on the ground quite often things do happen. However, not all MPs are going to be aware of severe M.E particularly, but M.E more broadly, chronic illness more broadly. So the APPG can do something positive, and draw up guidelines that can be rolled out to all MPs on how to intervene on behalf of chronically ill, particularly severe ME and ME patients. Boom, done. Then MPs can start getting involved in their local NHS Trust.

The second point in the Health and Social Care Select Committee. Again, that is what that committee is there for, they do have power. The APPG does not have any power in Parliament, the Health and Social Care Select Committee does have power, it has the power to hold inquiries. It has the power to compel witnesses to attend. It has the power to ask questions of government. That’s its job. And again, I should have got a dictaphone and just recorded what I just said about two minutes ago, because I’m going to repeat it again, where, you know, we’re in a period where we’re seeing the biggest uptick in chronic illnesses, long COVID……it’s its job!! And it should be doing this. We shouldn’t have to tell it to do it. It’s the biggest, you know, we sat actually, we were talking about a night when we sat in a neurology appointment at Kings in 2018. absolute disaster, complete waste of time. This was a neurologist who went, Yeah, it’s probably a childhood trauma, you don’t remember, I’m gonna send you the Maudsley. So, you know, there were no good takeaways from that appointment. The one good takeaway was this Neurologist just said, and she was quite right. ‘In the 21st century, chronic illness is the equivalent of how cardiac disease and cancer was in the 20th century, It is the biggest challenge facing medicine society in terms of health, in this century, is chronic illness.’ And yet, here we are doing this podcast because it’s still an absolute mess. So the Health and Social Care Select Committee have the power to start doing something about that. That’s what they’re there for. So they need to do an inquiry they’ve currently got because I checked seven inquiries on the go. Lovely, make it eight, please, and do an inquiry into post viral illness in this country, the treatment and the associated conditions, because currently, it’s a mess.

M.E Foggy Dog 22:24
Yeah, I agree. I’ve actually got my own experience with that . I’ll go into that in a minute. I’ll let you do third point. And then I’ll say what I’ve been doing.

Steve 22:33
The third point is obviously hilarious, because it’s we know it’s not going to happen. However, again, this is this is this department’s job, the Department of Health and Social Care needs to conduct a review of how NHS England, they’re responsible, the GMC, they’re responsible and Health Education England, they’re responsible for how medical professionals are implementing these NICE guidelines. I don’t need to go into this because I imagined nearly every person listening to this podcast will know that those 2021 guidelines are not being implemented properly. They’re not. You still see people being referred to graded exercise therapy, albeit they may not use that name, they’re going to dress it up as something else, it’s still GET. And demonstrably, the severe M.E guidelines are not being implemented as Sami and Alice’s situations, and other people on social media who’ve now come forward, clearly shows – they ain’t been done. It’s not happening at all in any way, shape, or form. So the DHSC needs to conduct a review into what on earth is going on with these guidelines. Because the guidelines are bad enough in the first place, it’s even worse that they’re not even being implemented properly. So that’s why we did this. And as I said, we’re under no illusions that those last two parts are going to happen. As a minimum, Carol Monaghan, the APPG on M.E, you can damn well meet like, frankly, and I’ll put that on the record now. I will, she follows me on Twitter, I will be private messaging her and emailing her saying what on earth is going on? And will you come out on Wednesday to our protest to explain how the APPG is going to deal with the situation.

M.E Foggy Dog 24:16
Good. The APPG of around 18 months ago, they said the individual patients had to email Carol Monahan’s secretary to get a copy of the minutes. And it was just ridiculous. Everyone was ‘where are the minutes? Why do I have to do all that to see the minutes?’ So I emailed the Secretary and said, I run two third sector organisations. I’m more than happy to create a page that houses these because they didn’t have a website. And then I was told by the Secretary ‘no, no, no, no, it’s fine. We’ll just carry on as we as we are’. And then within three months, they had a website but they haven’t done anything since. Yeah, so I feel all of your frustration Steve. But I did feel like I was banging my head against a brick wall with the APPG, because I think they’ve just released or in the last three months ‘Rethinking M.E’ – that document. Yeah, but to me it seems like a wish list. And instead of coming up with a wish list, why weren’t they actively working on each of those things? Or maybe they have been, like you said, maybe they’ve been doing the work in the background but not having the meetings. But surely we need to know that

Steve 25:23
At the minimum, out of respect for the people that you are supposed to be representing, you could at least say that. There could at least be some communication. And look, this all comes with the caveat that I’m aware that there are mutterings on social media about Carol Monahan’s personal circumstances, which is fine, give the chairship to someone else. And the point being that if you, you know, if there’s stuff going on your personal life, we all have it, of course, that’s fine. But please don’t derelict your duty to the people you’re supposed to be representing, hand it to someone else, and let’s get the ball rolling on this. And as I say, it’s, at best, it’s quite disrespectful to M.E patients, at worst, it’s just a mess. And if you can’t do it, don’t but at least let us know. Yeah. So let’s see, I’m more confident, to be honest, I’m more confident with the APPG, the reason I’m more confident Sally is I’m also a journalist, remember, and people do not like journalists digging around in stuff. So I may I may get a response, but I will see.

M.E Foggy Dog 26:31
I will keep everything crossed. . So people that don’t know, I run M.E Foggy Dog and Stripy Lightbulb CIC, with my Stripy Lightbulb CIC head on, I’ve been tackling human rights abuses of M.E/CFS patients in the UK, but also internationally. And I was doing a joint project with Retha Viviers, from the MECFS foundation in South Africa. We contacted the World Health Organisation and the UN back in the summer of 2021. Funnily enough, we didn’t get anywhere with that, but we are pursuing it. And obviously, most people in our community are aware that Retha has since passed away. And while her charity is undergoing a period of transformation, those plans are on hold. But it is something that we’re going to be pursuing again in future. But as a side issue for the UK only, Stripy Lightbulb contacted, first of all, the Joint Select Committee on Human Rights. They said they were too busy and said maybe you’d like to contact…they gave us three other select committees, one of which wrote back to us and it was the Joint Select Committee on Health and Social Care. And it was the Chair Jeremy Hunt MP, who wrote back and pretty much said, Well, we’ve been really busy because of the pandemic. There’s massive backlogs. This was in March 2022. So this is a year ago, a part of his email said, ‘I’m sorry to say that unfortunately, our committee will not be able to assist because it would not be appropriate for the committee to express an opinion on the matter.’ This is the bit that gets me ‘unless it carried out an investigation into it and heard evidence from all sides. And that I regret the constraints of the committee’s programme will not allow it’. In other words, we’re already looking at…. You said seven, seven inquiries. Steve, is it this committee? Yeah. Why can’t they have an eighth? So I emailed him back, I said it politely. But I basically said well, I didn’t think you’d have an inquiry without investigating. So can I suggest that you do have an inquiry and he didn’t reply to that email. But that was a year ago. No one seems to want to touch it with a bargepole.

Steve 28:47
Where do you begin? I’m not surprised from what you’re telling me, sadly, that none of these government bodies responded. Because some of your listeners may be aware, but there’s also the UN Committee on the Rights of Persons with Disabilities, UN CRPD. They have their own convention, the UN Convention on the Rights of Persons with Disabilities. And the UK Government, for example, is ratified that it was one of the first nation states to ratify this convention. So yeah, we’ll sign up to that we’ll make sure that’s happening. I mean, they did this the UNCRPD did this damning inquiry in 2016, which quote, not my words, even commit these words, found grave and systematic violations of disabled people’s human rights in this country. You know, when I was writing on this back in 2016, the report into the UK was comparatively worse than the majority of other countries who had signed up after the UK did and it was the first time the UN CRPD has issued such a damning report about one of the initial signatories to to this convention, and the UK government’s response. I was to dismiss it and sweep it under the carpet. And so and then and then and oh, we’re not doing anything wrong, and ignore it. And that’s it. And you know, that level of investigation. So I’m surprised when you’ve approached these smaller bodies within the subsections, or most of the UK Government, that they have not responded appropriately, because it’s par for the course, it is par for the course. Because in the same way, disabled people have been gravely and systematically had their rights violated by successive UK governments. Here we are, it’s the same for chronic illness. I mean, we can sit here and list off how many articles of the Universal Declaration of Human Rights from the UN have probably been breached multiple times with chronically ill people, let alone you know, how many articles under the UN Convention for people with disabilities have been breached for chronically ill people, because chronically ill people are disabled people. So it’s unsurprising however, does it mean we shouldn’t do it? Well, no, of course not. We, you know, we’re in the same way, as you, Sally, I’m sure you’re under no illusions to expect some wonderful response from these government departments and saying, ‘Oh, yes, we’ll do this, we’ll do that, we’ll do that. Blah, blah, blah’. However, the point is to give them the opportunity to do something, and then let them effectively dig themselves into their own hole, because it’s more damning on them that they are not responding, or we said, we haven’t got time, than it would be if, you know, they responded in the positive, it sums up the issue, and all they’re doing is it’s confirmation bias, that they really don’t care. And they don’t care. Because, you know, we are, we’re talking about marginalised people here who have no, in the system’s eyes, value – because the majority of time you cannot work therefore, and you know, our whole society is based on the notion of value equates to something financial, your financial contribution to the society, is your value, not your value as a human being. Therefore, chronically ill people can’t work they of very little value in the system’s eyes, therefore, why would people care? You know, we’re kind of dealing with some fundamental questions here about how, as a species, we actually operate as a society. But actually, that’s kind of what we’re dealing with. When we live with these government departments. Clinically and disabled people are expendable. They’re marginalised, they are expendable, therefore, you know, well, we’re not really concerned, we haven’t got time. Sorry we’re a bit busy. And we will keep seeing this until something, something changes, however, it’s still important to expose the fact that these departments do have that approach. So I know, I was just thinking about actually that it’d be very interesting because I know the UN Committee on Rights of Persons with Disabilities is now doing another investigation into the UK. And I know that the charity, Chronic Inclusion, which is a chronic illness charity has done a submission to the UN on specifically M.E this time, about the treatment of M.E. And it will be very interesting to see what the UN CRPD comes back with this time in response to the evidence of Chronic Inclusion has submitted because, for example, some of the UN CRPD articles around social security, that is social security adequate enough for disabled people to have equal access to life and, where I don’t have to tell you on this, our social security, our benefits are not adequate at all. The UN has repeatedly said this, you know, the EU has repeatedly said it. However, it hasn’t been said in the context of well, actually, people with M.E are restricted and chronic illness more broadly, are already restricted in terms of even being able to access those benefits. Because for example, Personal Independence Payment is not designed for chronic illness, the criteria for Personal Independent Payment is designed for people living with physical impairments. And if you try and apply for that, as a chronically ill person, if you’re, you know, in a position where you’ve even got a correct diagnosis in the first place, you’re likely to be extremely limited in meeting the criteria for Personal Independence Payment to get what you actually need. Because when you actually go through it, in no way represents the reality for chronically ill people. It represents reality for people living with physical impairments. I think there’s some interest coming up and people should watch out for it. UNCRPD reporting on the UK Government again, and see what that UN body says about the situation for people living with M.E specifically. And what they highlight. The long short of it is that we don’t expect a result from the Department of Health and Social Care with that demand, as you’ve just demonstrated, with the work you’ve been trying to do on it. However, again, it’s important to expose the fact that they are responding in this in this negative, negligent, negligent way. So, but we’ll see, we’ll see what happens with our three demands, we will be handing them into parliament, we’ll hand them into the Department Health and Social Care. As I said, I will be badgering Carol Monahan to see what’s going on with the APG on me. And yeah, let’s, let’s see what happens with all that.

M.E Foggy Dog 35:25
Okay. And just finally, to sum up what you’ve said in your promotional material, you said people that can’t attend can get involved in another way. So do you want to go into that a little bit?

Nicola (Nic) 35:35
So basically, in our protest in 2021, we knew that obviously, there was loads of people that can’t actually be there in person. So we asked for them to send us a photo of themselves, it can be of themselves, it can be anonymous, we obviously understand that people don’t like to identify themselves sometimes, and just basically, a brief description of who they are, how long they’ve been living with M.E, or the chronic condition that they’re living with. And we can then show them during our live stream. And also, it’s incredibly important, what I think made our campaign last time so successful, was the fact that there was so much support online. And, you know, this, this was global support. It wasn’t just from the UK, this was global support, and it and it was so much appreciated, our hashtag this time is going to be don’t let me die. So #DontLetMEDie. We really do need everybody who cannot attend to, if they can, just continuously put out that hashtag whilst we are doing the protest. And hopefully, we will be able to, again, get it trending. Last time we was trending, I think it was top five, we were fascinated that we actually managed to get that much attention. And you know, it did help, the guidelines were changed. Unfortunately, you know, there’s still more to be done. But this is the whole point of a collaboration and you know, doing it collectively. If we all put our, if we’re all able to put our heads together our energy in this and ,you know, really give it a push, we hopefully will get somewhere with it. So yeah, we were asking for people if they can’t attend in person, you know, that’s why we’re there, we totally appreciate that and understand that. I don’t know how I’m going to be in person on the day, I’m assuming that I’m actually going to have a good day that day and be absolutely fine. But we will see. And if they’re not able to attend, please just send us a photograph and to our email address, which is

Steve 37:56

M.E Foggy Dog 37:59
I’ll put the link on the text on the podcast.

Nicola (Nic) 38:04
Thank you. And then obviously we’ll be able to print it off or laminate it and then we’ll we’ll take it out with us. And we’ll make sure all of these pictures get put on our live stream. So they can still be part of our protest. And you know, they’re very much our part of our protest. It is incredibly important.

M.E Foggy Dog 38:20
Yeah. And we said before we started recording that it does coincide with International Women’s Day. So you’re gonna link it in with that to try and get more traction?

Nicola (Nic) 38:29
Yeah definitely. Definitely. I mean, you know, as we know men and women are affected, but it’s disproportionately women that seem to be affected. And unfortunately, it’s also disproportionately women that experienced the medical misogyny and that side of these conditions. So I think it’s connected. I don’t see why it can’t be connected, and we will do what we can to try and see if they can’t come and support us as well. We are women in need, we need support.

M.E Foggy Dog 39:03
Yes, completely agree. All right. Well, I really hope it goes well on Wednesday and will keep everything crossed that this is the start of something positive. But yeah, onwards and upwards. Thank you for talking to me today Nic and Steve.

Nicola (Nic) 39:18
Thank you, Sally for having us.

M.E Foggy Dog 39:21
My pleasure.

Please engage with #DontLetMEDie on Wednesday 8th March.

Let’s do this!