Earlier this month I had the opportunity to appear on a podcast by Help Sheffield, a volunteer-run service that helps people find answers to queries in and about Sheffield, and promotes local events and organisations. They primarily do this on Twitter (find them here!) but they also have a back catalogue of over 40 podcasts featuring individuals, businesses and charities local to Sheffield.
In this podcast I talk about:
what ME/CFS, Fibromyalgia and Long Covid are
the history of our charity and what we offer
how you can help us spread the word
a little about other organisations in Sheffield
... and a little about me!
The episode is 20 minutes long.
The transcript is 7 pages long.
Or, you can read the full transcription below.
Please spread the word about this exciting achievement for our charity! Tell your friends and family, tell your clubs or groups, share it on social media - and don't forget to tag us!
Help Sheffield Podcast episode 42 transcription:
Help Sheffield Elf 0:00
Good morning, good afternoon, good evening or good wherever it is, whatever time it is wherever you are, can’t even say that bit right. So that started well, hasn’t it but I'm not going to edit it. I'm going to carry on. This is Help Sheffield podcast episode, I think 41, maybe 42. No one cares anymore, but we'll carry on anyway. Got our guest this week this month. We're going to talk to Pippa, Pippa introduce yourself, what brings you to the help Sheffield podcast?
Hi, I'm Pippa. I've been a Sheffield resident for 12 years now and I work for a small local charity called Sheffield ME and Fibromyalgia Group. So I wanted to come on the podcast today, after our lovely Elf here has supported the charity by retweeting us and helping us spread the word of the things we do in the city. So yeah, I'd like to come and talk a bit more about what we do, what we offer, who we support, and why I'm involved with this charity.
Okay, I'll take you back a step, probably explain to some people who may not know what ME and Fibromyalgia are.
Of course, right. So this charity, we support three chronic illnesses actually, we recently started supporting Long Covid as well. So ME, also known as Chronic Fatigue Syndrome sometimes, is a chronic, invisible, multi systemic neurological illness as defined by the World Health Organisation. This status has been recognised by the NHS and NICE clinical guidelines in the UK. So it's had a rather complex past in terms of how it's been viewed by researchers, medical establishments, and the press, who have often given it pejorative terms like ‘yuppie flu’. Whereas the research indicates that this is a very real physiological illness that affects the whole of the body and can be severely debilitating and disabling. Quality of life studies have found that the level of impact on functionality and a person's quality of life can be as severe and profound as MS, kidney disease and cancers. And the amount of funding going into research this illness is a fraction of the amount. It was only in the last nine months that it was recognised by the NICE clinical guidelines in this country, that you couldn't cure this with CBT talking therapy. So it's a very complex illness. And one of the things that makes it remarkable is a symptom called Post Exertional Malaise. Now, this is a very specific thing that you don't really get in any other illnesses. And it means that if you exert yourself, you get worse, you get more ill. So typically, what has been recommended for people with chronic fatigue is increasing your activity levels. Because in most people whose metabolisms and central nervous system works correctly, that's helpful. In people with ME, that makes the illness worse, and it can deteriorate the condition. It's estimated that 265,000 people in this country alone suffer from ME. And of those 25% are severely affected, which means they are house bound or bed bound. And many of the people who are bed bound can't tolerate light or sound. And it's a horrible, horrible existence that has been denied and gaslit by the medical establishment for decades now. So that's ME, there are many symptoms about which I could talk for a long time. But in the last nine months or so there has been some massive progress in this country in recognising the status of this illness, how profoundly it affects people. And we think that a lot of this might be because of the massive wave of Long Covid which is affecting people. So Long Covid is any long term complications from an infection with the Coronavirus and this can even be from an asymptomatic infection. There does not seem to be a massive correlation between the severity of the initial infection and whether or not people then go on to develop long term symptoms. So there's, there's something else going on which the research doesn't understand yet. And Long Covid presents in a number of different ways, but there's a large chunk of it that presents identically to ME/CFS. And ME, typically speaking, not in all cases, but in most cases is thought to be triggered by a viral infection and is part of a group of post viral syndromes. So it kind of makes sense that some people coming out of Covid and… are then developing ME. So as a result as a charity, we've elected to support people with Long Covid as well. And we're very keen to reach out to people in the community in Sheffield, South Yorkshire, North Derbyshire, who have been affected. And we know that there's up to 2 million people in the country who are affected with Long Covid which means highly likely to be 15,000 people in the Sheffield area alone.
Okay, how does - how does Fibromyalgia differ?
So Fibromyalgia is… it's often considered a sibling of ME, in that it’s part of a, you know, a cluster of illnesses that affect the whole body, but they don't necessarily show up on your typical array of diagnostic tests that your doctor will send you for, and may well be triggered by similar factors. So Fibromyalgia is a chronic widespread pain condition. So it means that a person will have long term, so for a number of months and on, of pain that can be any part of their body and typically isn't restricted to one side, or one quadrant of their body. This can be burning pains, aching pains, it can be tingling, numbness, it can be a stabbing pain, and it can be debilitating in severity, and often comes with heavy fatigue, and a phenomenon known as fibro fog. So the way it affects the nervous system, or perhaps the level of fatigue it gives you, it can impair your cognition and means you struggle with word finding, you struggle with concentration, you struggle with anything that you might take for granted. And we see a similar thing in ME as well, brain fog. And it's really quite a characteristic symptom and a lot of people with Long Covid and are experiencing this too. And it can be really quite distressing for people to live with this invisible condition that is really impairing.
So what can you tell us about the charity? When did it begin? How did you get involved? What does it do?
Well, I'm delighted to say that this is our 20th anniversary year. So the charity was set up originally in the 90s as a peer support group. And they discovered that there's sufficient need in the Sheffield region for some real structured support. So 20 years ago, this year, they became a registered charity. They're not a subsidiary of any national groups. They're an independent local charity. They offer a variety of support and services from activities in person and online to increase wellbeing and increase social interaction for people that can be very isolated. These can be arts and crafts, or mindfulness for wellbeing, or cooking workshops. They also offer some benefits and social care advice because it can be very difficult for people with these misunderstood conditions to access the benefits and social care support that they are entitled to and desperately need, in many cases. We offer information signposting about resources that are out there, we have a forum online for members, a private members Facebook group, whereby people can give peer support to each other, because often that can be a point of solidarity and understanding. And we have a quarterly printed magazine, which is always chock full of articles, and information about upcoming activities. We have in person meetups, and at the end of the summer, at the end of September, we have the Winter Gardens booked out for two weeks to host an anniversary art exhibition displaying creations from our members that express their experiences of these illnesses. And I'm really looking forward to that.
Sounds splendid! It all began 20 plus years ago, so it started as a support group and then became a charity. Where can people find you, is one of the things that I think people will need to know.
The most important question. So you can find our website at www.sheffieldmegroup.co.uk. You can find us on Twitter at @sheffieldmefm. And you can find us on Facebook at Sheffield ME and Fibromyalgia Group. From there you'll be able to follow various links to find our YouTube channel with previous recorded talks from international experts scientists, more specialised support groups for Long Covid and so on. Yeah, we would be delighted to have you. Now we do charge a membership, it’s £12 a year to access things like our Benefits Service, our activities. But we offer information signposting to everyone, that's freely available.
Are you going to add Long Covid, the title of your charity, I know it’s quite a long named charity already! I just wondered if people aren't aware of that fact when they just see your name, I'm just wondering where we could squeeze that in somewhere.
I am a relatively new addition to the charity myself, I believe the decision was made not to include it because it is already quite a cumbersome name. But who knows what's going to happen in the future and what decisions are going to be made, depending on what people of Sheffield need.
I don't think they know, the people Sheffield don't know what they need. That's why they need - that's why they need help. So the two questions that I said at the start that I would ask you were what can Sheffield do to help you? So as you've told us, pretty much what you can do to help Sheffield or certain members of it, but what can Sheffield do to help you, what are you looking for maybe,
I think what I would personally love is if you could spread the word to anyone who's experiencing long term symptoms of Covid, that there is help out there, that there is a charity specifically for Sheffield, that has support and information and activities, specifically for people with Long Covid and other associated illnesses. So tell your friends, if they’ve had - I’m using the plural generic ‘you’, I wouldn't want to make assumptions! So tell your friends if they have any long term complications from Covid. Or if they've been dealing with chronic pain or chronic fatigue for a long time, and they've been suffering on their own, suffering in silence, and they think there's nothing out there, just let them know that we're here.
I suppose if you - if you are bed bound or similar, do you do meetings via zoom or something these days, have you started doing all that sort of business?
Yep, we try to offer a mix of online and in person activities. So some of them will be entirely online to make them more accessible for people who are restricted in their mobility, and what they can do. And we also offer in person activities, because we recognise how good for wellbeing it can be to get out and see people face to face for people who are able to do so. We're very shortly launching a programme of Forest Bathing, which is a mindfulness wellbeing activity involving being close to nature. And we've been able to find a way to deliver this both in person, in an accessible location that people can use mobility scooters to get to, and also we're having online sessions, which will be a more mindful meditation focusing on whatever small bit of nature you can bring into your home or see out of your window. So we - Yeah, precisely, or even a bowl of water and how it feels around the fingers or a leaf or the swaying tree outside. So we try very hard to tailor our activities to be as accessible as we can to a wide variety of members because we know that no one individual thing will be suitable for everyone because of how broadly these conditions can affect people.
Just on a little side issue to that. I know that S and four Cs in Sheffield are currently looking for people to do their neighbourhood meetup scheme. It's usually for older people. But if anyone wants to look them up they’re SCCCC online, just that I’ve thought about it. It was on Radio Sheffield this morning. So I thought I'd throw that in there while I could.
A good progression, SCCC, a wonderful charity that do a lot of great work with older people in Sheffield.
I thought about doing it but I can't remember why I didn't. There was something that - I started the process and didn't get any further and I can't remember why, I’ll have to revisit that. Okay, thank you, Pippa. Is there anything else you'd like to add? I don't know if - I don’t know if you want me to feed you more questions or if you've just got things that are going around your head or that you just…
I mean I guess I'd like to say a little bit about me. So I myself have ME and Fibromyalgia. And this role with this charity that I've been doing for a few months now is the first time I've been able to work in over a decade because of how ill this illness made me. Using pacing strategies as recommended by the major ME organisations, the ME clinic in Sheffield, I was able to build myself to a place of stability where I could finally take on a little bit, so I'm working part time and I'm working flexibly and that's helpful for me but I've got employers who understand what I'm living with visually.
It would be a bit rubbish if they didn’t
One would hope so, right? But having that kind of flexibility of being able to work from home, of being able to you know, choose your hours depending on whether you're well or not, is a massive thing that employers can do to increase how accessible they are as an employer for disabled people and chronically ill people. And I'm benefiting from that right now. It's a big challenge stepping back into the workplace after so long out of it, and I get scared a lot, because it’s been a long time.
Even for the rest of us, it's been over two years since most of us have done anything, pretty much face to face. So we’ve all sampled it!
I'm doing my best. And I'm enjoying the fact that I'm able to do something for my own community. And I'm really looking forward to where this Summer’s programme of activities is going to bring us, to the culmination at our exhibition at the end of September.
Does being interviewed by an Elf count as work?
Oh, definitely. I'm on the clock right now.
Oh right okay, it’s alright for some. I'm just waiting to get to the pub, but that's another story. You mentioned in there, the ME Clinic, please tell us what that is.
So Sheffield is fortunate enough to have a specialised NHS ME clinic, which is based at the Michael Carlisle Centre in Nether Edge. Now this is not affiliated to us as a charity. This is part of the NHS. And what they can offer is sadly limited by the fact that there is no cure for these illnesses. There is no real proven treatments apart from this method known as pacing, which is to do with working out what your safe energy window is, in terms of how much you can exert yourself mentally, physically, emotionally, and being sure to stay in that. Because it's when you go beyond that energy envelope that the symptoms worsen and the condition can deteriorate. So that's something they support people with. I'm not sure what else they currently support people with. But I know that they and Sheffield IAPT which is Improving Access to Psychological Therapies, which is the first point of call for mental health support, they are both working with the new NICE guidelines which say you should not recommend Graded Exercise Therapy for people with ME because it can make the illness more severe. And you should not offer CBT as a curative therapy, but as only as a support. So as a charity, we're really delighted to see that these two other sources of support for people with chronic illnesses in the city are following the guidelines so closely.
I was like Sheffield’s doing something right! It’ll surprise most people who listen to this podcast.
Well, we're doing our best to work together, which is I think really important to support people who are more vulnerable. The more that these organisations - of which there are many of us, and Sheffield has some fantastic charities - the more that we can work together, the more effectively we can support people who need it.
It's one of the things that I've been trying to push for for the entire time I've been doing the Help Sheffield thing is people collaborating. I don't know if I've got anything specific but like the Twitter list that I've created, they're just full of - if I was a plumber one of the first thing that I do if I joined Twitter would follow all the plumbers on the plumber list to see how they're doing Twitter, what work they're not able to do because they're too busy, etc etc. Lots of collaboration in there that I don't think necessarily happens in any sphere in the entire city. I've also used to think that you've got to be against each other.
Yeah, we are fortunate enough to have our offices in The Circle which is Rockingham Lane Sheffield, fantastic building which houses lots of charitable enterprises. It's the home of Voluntary Action Sheffield, through whom you can find all sorts of volunteering opportunities in the city, if you're interested in giving your time. And being in that building means we have links to already you know dozens of other organisations, and it feels like a very wholesome place to be.
It’s not round though is it? The Circle is not round! Every time I walk past it I think, you’ve got written ‘The Circle’ on the front but you're clearly a rectangular building!
It's spiritually a circle, it’s about that togetherness!
Oh okay, I knew I was missing something.
Okay the circle of life.
All right don't start singing on me.