Gary Burgess - The ME show, and updates about Gary's health.

Gary Burgess said:
Morning all.

Episode nine of The ME Show is out, today. I speak to MP Carol Monaghan about Prof Michael Sharpe, ‘that’ Rod Liddle column, the mood in parliament and much more.

Stream: www.meassociation.org.uk/themeshow

iTunes: https://itunes.apple.com/gb/podcast/the-me-show/id1374903449?mt=2

Spotify: https://open.spotify.com/show/5WBZAoe9zuy9O5HmxwAVIf?si=UQ_SFTSXT52jZqbaixwIxQ
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Thanks - marking this to listen to later. I'm just not finding time to keep up with all I want right now! Thanks to everyone.
 
I've done a transcript of Episode 8 with Dr Nina Muirhead;
The ME Show Series 2, episode 8, March 2019.


GB: Dr Nina Muirhead welcome to the ME show, how are you today.

NM: Oh, I’m having a good day, obviously you can’t always tell what it’s going to be like but it is a good one so I’m keen to get chatting to you and talking about my experiences.

GB: I’m delighted, I’m glad the stars have aligned that we’ve got both of us on a good day. That should ease things tremendously. Before we talk about you and M.E., I just want to talk about you professionally first of all for people who don’t know who you are. I didn’t know you until someone shared with me a video when you were giving a presentation about yourself and your own M.E. experience and journey, but prior to that your career is in medicine.

NM: That’s correct. So I’m a dermatology surgeon, which means that my day job is cutting out skin cancers. And I’ve worked for the NHS since 1999. I trained at Oxford. I then worked in various London hospitals training in surgery, plastic surgery to begin with, and then in 2014, I changed across to dermatology. And I didn’t really get taught about M.E. during any of that time, during my training, so when I became ill in 2016 it was a shock that this was an illness that I didn’t even know about.

GB: Am I right in saying not only an illness you didn’t know about but perhaps an illness that you didn’t even believe in back in the day.

NM: Correct. So sort of in the back of my mind, I had some sense that it was often a glandular fever virus, and that people would end up very ill in bed for several months. And I truly believed that perhaps there was an element of deconditioning or perhaps a bit of depression. But my experience personally was the complete opposite. I’d become ill in September 2016 with a series of viral infections. I had chest infections, sore throats, diarrhoea and vomiting, sinusitis, high temperatures and I’d continued working because I deal with skin cancer patients. I felt that I couldn’t keep taking sick leave. I just carried on working the whole time and I even carried on exercising. I went to Pilates classes I went to circuits, but the entire time I just became sicker and sicker, and less able to manage even basic things. So, I couldn’t think straight, I was having trouble planning meals, I was driving around the car park at work trying to get as close as possible, I was using disabled toilets, starting to choose different clothes to make them easier to get on and off. So I was constantly adjusting to try and continue as normal,

whilst being extremely ill, until I finally collapsed in April 2017.


GB: This element of your story which came across on the video I watched, and I’ll put a link to it in the show notes, is the bit where it felt like your life and my life were mirroring each other. I look back now and realise the madness of it. But it’s that life long instinct isn’t it, where you’re ill, you fight through it, exercise will get you better, pull yourself together, you’re letting other people down, it’s all the very worst things you could be doing for yourself.

NM: Absolutely, I mean I was really pushing myself. One of the first things that rang alarm bells with the GP was that I said I took three or four hours to empty the dishwasher. And she said if you’re that ill you shouldn’t be emptying the dishwasher. But in my head I was still driving myself to try and keep things going as normal in the house.

GB: And there is an expectation that that will then fix itself over time, but just take us on over that period of time, when your body finally went pop, and you finally realised no, you’re not going to win this battle.

NM: Well I did try to return to work a couple of times after just taking two weeks off initially and then a further week. And on the second occasion I did a half day list of operating in the morning and I started trying to walk down the corridor to leave the hospital, and the walls and floor were moving. It was like I was on the Titanic. I was literally close to collapsing and I thought this isn’t safe, I can’t actually continue as a doctor practicing if I can’t walk up the corridor without the whole thing swimming. And when I finally did realise that I had to rest it was such a shock as to how low my capacity was. Looking back I couldn’t even read very well at that point, I’d stopped watching television, because that was too much of a sensory overload, I’d really cut all of my social activities, and my whole life was imploding. And in the end I spent four to six months mainly in bed, and for four of those months I was nursed by my parents.

GB: Goodness, there’s a time in your life when you also realise which are the people who matter, so knowing there’s some good people around you is absolutely vital at that point.

NM: It was vital, and it was also heartbreaking for me because my young children were then aged two and four and a half, five, and I couldn’t actually spend more than a few minutes with them. I couldn’t pick them up because my arms where in agony, I couldn’t listen to them talking to me, I couldn’t concentrate on what they were saying and so I had to live apart from them to enable me to recover enough capacity to spend even just ten minutes a day with my own children, which is horrendous for a mother.

GB: I cannot even imagine that. And whilst all that is going on, while your professional life is on hold, your family life is suddenly distorted, and you are going through this living hell, for want of a better description, at that point you don’t have a label for it either.

NM: No, so I’d delayed my own diagnosis for a good three months having had the positive glandular fever results in the April 2017, which I’d clearly had for about nine months before that, I then looked on the NICE website about M.E., Chronic fatigue syndrome, and I read that this was an illness that would get better with cognitive behavioural therapy and graded exercise, and I thought well that’s not what I’ve got because I’m mentally extremely strong, and exercise makes me worse. So I completely disregarded that diagnosis for myself for a good three months. I thought maybe I had a brain tumour, or Multiple Sclerosis.

GB: Do you know, it feels like parallel lives, I did the same I sort of came doctor Google, came across ME, remember reading it and thinking yeah yeah that’s me that’s me, but then you go through the guidelines and its oh no its not me because this exercise thing is really not the right idea and then stumbling across MS as the next best thing. So when eventually did you get to find out that it was M.E.?

NM: So I have a lot of credit to hand to my fantastic GP, who in July 2017 , so nearly a year after I’d started getting ill, listened to me, I had to write everything down because I couldn’t even remember things . So I was in the consultation, my heart rate was 140, I couldn’t think straight, I couldn’t even make eye contact, but I’d written down things like, ‘I can’t read, I can’t concentrate, I’ve got these sore throats, every week I’ve got sinusitis, I’ve got muscle pain” and she said ‘I know what you’ve got’ within about five minutes.

GB: Is that point a relief or is that point a heartbreak that you’ve been through all of this to get something that only took five minutes in the end.

NM: I think it was a relief. And any doctor who has been putting off diagnosing a patient should just go ahead and diagnose them and not worry that they are going to be upset because it’s a horrible diagnosis to have but at least it’s a start of being able to be kind to yourself and give yourself a break, and rest, and know that there’s nothing mental causing the lack of energy in yourselves.

GB: What happened since then, because between then and now I mean there’s a whole world of professional change which we’ll come onto, but in terms of Nina, rather than Dr Nina, just Nina looking after herself and doing the right things, what do you do?

NM: OK, well, I spent most of 2017 in bed, and I literally pulled backed everything. I pulled back all my social engagements, I stopped work completely, I didn’t do any meal preparation or cooking or housework, or anything. So I had a total break, and every time I started to try and take on little things, I remember trying to order a few things online for Christmas in 2017/18, and even that was absolutely exhausting. So I had to find my baseline, and really draw everything back until I could function without head crushing headaches, neck pain, sore throats, total fog. And as soon as I got a little bit of clarity and the fog began to clear, I’d be very careful about what I took on, and I made a lot of mistakes in the early days. I tried to a lot too quickly or if I’d have a good day I’d do more mentally and more physically which would be a disaster. So I’ve learnt to sort of spread it out throughout the week, and it took me another 9 months to work up from going into work for half an hour a week, to six hours a week. And again that was in fits and starts and I really had to pace myself. But by the summer of 2018 I was ready to say yes I was ready to take on just a couple of afternoons a week and I split them between a Tuesday and Friday afternoon, so I’ve got a couple of days to rest in between and now I am managing that and I’m starting to get a little more comfortable with managing that.

GB: And are you able to resist the temptation to think I’ve cracked this I’m the hero of the world I can do more.

NM: No, I still want to be the hero of the world; I still want to do more. I have to constantly be on my own case to rest and I’ve had to employ family members to tell me when my eyes are drooping and I’m not making sense anymore, to literally bully me back into the bed or go and have an Epsom salt bath, or stare out of the window. Just reboot your battery.

GB: They sound like a good bunch of people. Let’s move back on to your professional life now. It sounds to me that from working on skin cancer patients you are now becoming an evangelist for M.E. awareness raising. Tell me about the work you’re doing.

NM: So, aside from the dermatology work that I was doing, I already had a great interest in education.

So I have a masters degree in education, I’ve co-written a couple of medical text books, I’m a lecturer at the Royal Society of Medicine and have done various anatomy study weekends for medical students.

So when I started coming round from my coma like state, which I was in for several months when I was very severe, I started reading about M.E. and I could really tell that there was a huge gap in knowledge between what the patient understands and what the general doctor, particularly my generation of doctors, understand. Some doctors don’t even know about it, others are completely misled and think there’s a psychological component to perpetuating the illness which I genuinely don’t believe.

So I thought to myself, what can I do, I can use my skills in education to try and bridge this gap and that’s the start of my journey.

GB: And since then you’ve worked on not just one not just two, but you are currently working on three different projects to spread the good news of this work.

NM: Correct. So, I started to think how can we find out what’s going on now, also how can we implement suggestions for change in the future. One of the things I am looking at is nationwide, what medical schools are teaching on this topic. Obviously it’s been 18 years since I attended medical school and a lot has changed since then. And I certainly know that the delivery of subjects like Fibromyalgia have improved considerably. So I want to know what is being taught, right now, UKwide by medical schools about M.E. and what the variety is like, whether students meet patients with this condition. It’s very common in the UK. It’s more common than HIV and Multiple Sclerosis combined and they do feature on the syllabus. So I want to see how M.E. features on the syllabus and how that is different around the country and maybe even offer universities UK wide some learning materials, either videos or e-learning so that they can standardise it more to the rapidly changing biomedical information on this topic which is emerging through research.

GB: Pardon my ignorance here, just worth me clarifying whereas we have standard guidelines on patient care, does that imply there isn’t a standard teaching curriculum of medical students up and down the country when it comes to something like M.E.?

NM: Yes Gary you are absolutely right. Each medical school owns their own, sort of what they teach, and often employ very senior academic lecturers who steer that teaching; they can often be quite protective of what they teach. And yes it’s very individualised to each University.

GB: ‘Very individualised’ sounds like a beautiful euphemism for some of it can be wildly wrong because it’s some mad old professor, stuck in their ways from what they learnt in 1955.

NM: Erm, I wouldn’t be so critical. No, I think the medical schools do a fantastic job and they’ve doubled in number since I applied to medical school and the new Universities are really sort of tapping into quite a lot of modern evidence-based (??). But I think with M.E. we are in a definitely different situation it’s almost like an emergency situation where what a certain generation of doctors have been taught is actually totally wrong. And now the science is emerging to refute that. The patients have been very constant with their story and I think that doctors and teachers everywhere need to listen to that.

GB: And how do you turn around your work. It sounds like a lot of your work is basically gathering the information, so learning about the impact of M.E. on family members, learning about the role of GPs, learning about what’s happening in medical schools. Once you’ve learned that how do you pump out, I don’t know, conclusions, recommendations, findings to effect change?

NM: Well that’s exactly why we are doing the information gathering. We can’t make suggestions without knowing what’s going on already, and as soon as we start identifying where the biggest gaps are then we can begin to make suggestions as to how to fill them. We can write e-learning modules, we can even just put links to updated literature on to GP notebook guides for example. There are lots of practical ways in which we can start filling the gap in the knowledge.

GB: It strikes me, this is an awful thing to say, but I feel grateful you got M.E. I mean it sounds awful, but it takes someone in the medical world to be struck down by this to then have the wherewithal to change the world around them.

NM: Erm, the feeling is mutual. You’re doing your roles, spreading the word, and I think that’s the key. Unless you’ve had it you really don’t have a clue as to how awful you can feel and how it’s almost like having concussion, and you have no control over your energy levels, you can’t even think straight at times. And it’s only by people who’ve experienced it trying to educate people, spread the word, improve the general public awareness, that’s how we’re going to get there. So we’re all playing a role and yes it does help me accept my own illness. It’s been horrendous. But if I feel I can make a difference, because of it, then it makes me less miserable.

GB: That’s lovely. It all feels very perverse but it’s lovely. What’s your sense of where we’re at now?

I’ve asked a number of people on this podcast series. How hopeful are you that either understanding is improving or we’re nearing that breakthrough as to what the hell this thing is. What’s your feeling right now Nina?

NM: I’m really hopeful. I may be wildly optimistic but I genuinely think that in the next 2-5 years we’re going to get some really big breakthroughs as to the understanding, possibly biomarkers, and possibly treatments.

GB: I like your optimism; I will hold you to that. I’ll phone you up in two years and see how we’ve got on. Nina I really appreciate you spending the time today. Thanks for joining me on the ME show.
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On a personal level it struck many chords with me not least the trying to go back to work bit...also occurred to me that 18 years ago (when she started medical school) was when I fell ill.

I'll try and do the latest one with Carol Monaghan when I can.
 
Done the transcript for Series 2 Episode 9 with Carol Monaghan (apologies if there are errors, I've not gone through it thoroughly).
The ME Show S2E09 Carol Monaghan March 2019


GB: Carol Monaghan MP welcome back to the ME Show. How are you today?

CM: I’m fine thanks Gary. Things are busy in Parliament this week as you can imagine so we’re all kind of running about like headless chickens, but not really knowing what we are trying to achieve, so interesting times.

GB: Is there anything going on? I hadn’t noticed.[laughs]

CM: No, not much. Actually there isn’t much, which is the problem! We should actually, with ten days to go, be doing a lot more than we’re doing at the moment. Anyway that’s the state of affairs.

GB: Right that’s the very last mention of the ‘B’ word of Brexit for this podcast let’s get on to the ME word. I spoke to you last year in series one of this podcast, and I didn’t know too much about you, I didn’t know a lot about ME even at the time, as I was learning about my own diagnosis. And at the time you told me your plan in Parliament was a slowly, slowly, catchy monkey approach to get more politicians to understand ME and the highs and the lows of the problems and the research and everything else around it. And since then you, earlier this year, established a debate in the House of Commons. That is huge progress.

CM: Yes, it was really good actually. We were very pleased about that. It was actually the third debate we had over the last twelve months, but the first two were in Westminster Hall. Now, Westminster Hall is a debating chamber in Parliament, but it’s a much smaller chamber and wouldn’t be recognised easily. But this debate that we had in January was in the main chamber, and was extremely well attended. So it was excellent progress.

GB: And it’s not a given that it’s well attended because these Thursday debates are often on a day when politicians are heading back to their constituency to do home business. But actually you had a really good turnout.

CM: Yes. Thursdays are typically not legislation days. So, it would be backbench business, items of interest which members may wish to raise. But there won’t be any binding votes on a Thursday unlike Monday to Wednesday. So often that is the day that MPs will travel home to be in their constituencies and try and get work done there. So a typical backbench debate might have between 7 and 12 people attending. But we had far more than that. I think over 20 people contributed but we had more people than that in the actual chamber which was excellent.

GB: And what was the actual point of the debate because these things don’t I guess get anywhere in terms of legislatively binding. What were you trying to achieve?

CM: Well they won’t necessarily get anywhere in terms of binding things but what we can try and do is force the Governments hand a little bit. Because it will draw more attention and will raise awareness of a particular issue, and can also, especially when we have lots of MPs speaking, really put pressure on the Government to make change. We had four very specific asks within the debate. We were asking, because there was a motion for the debate, so we were asking firstly for more money to be spent on biomedical research, which at the moment is sadly lacking, we asked for an immediate end to Graded Exercise therapy, we asked for training for GPs, and one of the most sinister I think of ME is that children with ME, often their parents have faced prosecution and child protection procedures. So we asked that there was an end of prosecution of parents of children with ME. So four very specific asks.

And, whilst the response from the Minister wasn’t altogether encouraging, it gives us a platform to really continue to apply pressure.

GB: And I guess it also helps that when people are going searching in the Hansard record of Parliament these things have been said.

CM: Yes, and these things have been said and interestingly when we were doing the research for the debate, and the previous mention of debate on ME had taken place twenty years previously. And what was really interesting was that many of the things that had been said twenty years ago we were saying again in January. So it was interesting but the record is there it’s a permanent of what is said in Parliament so people will see that. So that’s important as well but what was really quite encouraging from my point of view was a number of MPs who came up to me in the lead up to it and after it said ‘thanks for giving us the opportunity to speak about it. I knew nothing about it but I’ve found out and found it’s a massive issue’. So really we are raising awareness not just amongst members of the public but amongst members of parliament here with this as well.

GB: What happens when in the aftermath of that positive debate in just the past few days as we are recording this podcast now, we suddenly have an Oxford professor/researcher saying he’s no longer doing ME research because of cyber trolls. He goes on the radio for the Today program to give his side of the arguments. And Rod Liddle writing in the Sunday Times, talking about people with ME wanting to be ill, rather than accept help from the psychiatric part of the medical community. That must make your heart sink.

CM: Both those articles and actually Dr Mark Porter wrote a commentary piece on it as well which was not terribly helpful. It doesn’t make my heart sink actually Gary, it makes me angry. But I think the worst thing we can do is get dragged down by these negative reports. As far as I’m concerned, the likes of Michael Sharpe is a trapped animal that’s fighting. He realises now that his back is against the wall and he’s trying to slander as many people as possible. I certainly wouldn’t encourage anybody to be abusive to people regardless of whether we agree with what they are doing or not. But Michael Sharpe has also recognised that the research he has done has not been biomedical research it’s been psychiatric research. So he’s pretty much proved the point when he says you know he’s not going to do his research anymore. Great! Because we don’t want that research done anymore, we want biomedical research done.

GB: D’you know, I’m glad you’ve said that because I wondered whether I was alone in thinking instead of being angry that he’s having a go against cyber trolls, I was just happy he’s not carrying on with his research.

CM: Yeah, I mean it’s. We’ve got to be quite positive about that. But Michael Sharpe was the one, the person that emailed me before last Junes debate, and told me, or said he hoped I wouldn’t misrepresent his research, and that my behaviour was unbecoming of an MP. So, for Michael Sharpe to talk about receiving abuse from other people is really receiving some of his own medicine as far as I can see.

GB: Absolutely. What goes around comes around. I won’t rehash all the arguments during the course of this conversation but in the show notes that I’ll put with the podcast I’ll put some links to the background of Michael Sharpe and also the Rod Liddle article as well.

Where do you go from here Carol? You’re doing an amazing amount of work but you’ve also got a wider constituency in Glasgow to represent as well. Where do you go with your ME work?

CM: Yes, I mean one of the difficulties for MPs is that we have areas of interest or things that we are looking to make changes for but ultimately we are constituency MPs and we have to do that as well. So sometimes people from the ME community will get in touch and say ‘what’s happening next’. Unfortunately we can’t be doing it all the time. But what we have done over the last couple of months since the January debate is firstly I’ve had a meeting with the office of the Minister for disability, Sarah Newton, unfortunately she’s now resigned, but we had a meeting with her about DWP assessments for people with ME. And we were given some assurances over that So that was quite a positive meeting and I urge anybody who is having problems in terms of the DWP assessments, health assessments to get in touch with their MPs and highlight these issues to them. So, that’s something we’ve done and actually, this week on Friday in my office in Glasgow I’m going to be having an ME afternoon tea. And we’ve called it ‘Let’s talk about ME’, and that’s giving people the opportunity (it’s a local event) but it’s giving people with ME the opportunity to come together and talk about some of the issues they’re having, they’re experiencing and hopefully we’ll hear personal stories. I want to hear some decent stories as well about success as well as the difficulties that people have faced, but I’m looking forward to meeting these people and hearing what they have to say.

GB: Can I just ask on that DWP stuff; if somebody does contact their local MP, I guess some people will wonder, does that really make a difference? Do MPs genuinely take this stuff seriously?

CM: Oh absolutely. I mean one of the jobs of an MP is to respond to constituents concerns so if someone is coming with an issue they’ve experienced then the MP does really have a duty to raise that with the DWP either through written questions, or letters, or indeed through oral questions in the chamber. So it’s a very powerful way for people with ME to actually get a direct link into Government.

GB: Great, that’s good advice. In terms of one of the other issues we’ve spoken about this series which is the review of the NICE guidelines in terms of the treatment of ME; where are you at, are you plumbed into that process or are you more keeping an eye on that process from afar?

CM: Yeah, I’m keeping an eye on it. It’s not something that I’m able to influence in any way, nor would I want to. The people that are best placed to speak about that are the people that are actually dealing with the consequences of it. So the patients groups are involved, so we’re keeping an eye on what’s going on. What I do think is a bit frustrating though is whilst the review is going on, Graded Exercise Therapy continues to be prescribed and I would like to see it completely halted while this review is going on, while we wait for reviewed NICE guidelines. Because of course they are not going to be published until I think Autumn 2020 which is a long time to go if you are currently undertaking graded exercise therapy.

GB: Absolutely. And just for clarity, that was one of the four points you raised in your Commons debate, but you didn’t get any commitment back from the Government with regards to that specific issue.

CM: In fairness to the Minister on this point, it’s not up to a government minister to change NICE guidelines. I suppose that was really us just trying to highlight that particular issue. So that was one of the ones that, yeah we need to sit back unfortunately and let NICE take its time to come to its conclusions and hopefully these will be ones that we can agree with. So that’s not something that we can unfortunately really influence which is why I am watching this from the sidelines rather than getting stuck into it.

GB: and not that I expect you to arrange a debate every day of the week Carol, but I just wonder, aside from your fabulous afternoon tea, are you planning any more debates in the coming months?

CM: I think what we’ve got now is quite an interested group of MPs who are getting in touch fairly regularly and asking right what are the next steps, what now, how do we progress this.

GB: Do you mean they are all talking amongst each other and with you as a result of the debate?

CM: Yes they are, yes.

GB: Oh, right.

CM: It’s not all of them obviously, but many of them are and one of the things I did follow in the debate was I wrote to everybody who had spoken in the debate and thanked them for their contribution. In fact many of them have come up and thanked me for my letter! But it just means that these people hopefully are on board for the next, whatever the next part of this campaign is. But yes, that’s quite important that we have MPs now that have some knowledge of ME and are willing to be involved in whatever we try and achieve in this area.

GB: Let’s wrap this up with a bit of hope and positivity which is what I try to do. What is your hope of where we are now on this rollercoaster of supporting people with ME and finding the appropriate treatments and research? What is your sense of where things are at?

CM: I think one of the main things for people with ME is that they want to be believed. They don’t want the likes of Rod Liddle writing this fairly disgraceful article, they want to be believed they want people to understand that this is a real condition and I think we are moving towards that, certainly it’s a lot more positive than maybe it was ten years ago. So we are making steps in that area. Once people start being believed there will be a push for both better treatment and better diagnosis, and that’s the stage we need to get to. The treatment has to be suitable for the condition and in order to do that we need to do the research. But I am positive about this, that by continuing to put pressure, not just in government but also on journalists and also just in the general public, and continuing to get that message out, there will be really a desire to carry out the research that is required.

GB: Well listen, keep fighting the good fight. I know many people, myself included genuinely appreciate it. And Carol in amongst your mad, crazy week thank you for finding the time to join me on the ME Show.

CM: You’re very welcome Gary. It’s been a pleasure.
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Great talk to Mark Guthridge, both a patient and scientist.

Very interesting this work looking at cancer cells, normal cells and ME cells, - also hearing of the metabolic inflexibilitys that can be measured and possibly targeted to reactivate metabolism.

Also nice that he who have attended a whole lot of cancer symposiums with only doctors/scientists, finds these ME-symposiums where patients interact so valuable.

Great season, Gary. Thanks.
 
@Gary BurgessThanks for all your hard work on these shows.

I'm a bit behind, just caught up with the Carol Monaghan episode, which is great, I'm so glad we have her working for us.

I wondered if, in the show notes alongside the links to the Sharpe/Liddle horror, you thought it might be helpful to include a link to the video being discussed here https://www.s4me.info/threads/response-to-michael-sharpe’s-claims-of-harassment.8850/
Just to give the 'other side' so to speak?

It includes clips from the parliamentary debate so i thought it might be pertinent?

Just a thought
 
Gary Burgess said:
Morning all.

Australian medical researcher Dr Mark Guthridge is my guest on today’s tenth episode of The ME Show podcast (the last in this series).

Search ‘The ME Show’ in iTunes, Spotify, Buzzsprout and other podcast players or visit www.meassociation.org.uk/themeshow

Thanks.
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How is it the last in the series already?! It has been an excellent series Gary - really great guests and info. Thank you!!
 
Thank you @Gary Burgess for another fantastic series. And seriously well done for breaking the 30,000 downloads barrier! Amazing! It’s good to know that your podcasts are reaching such a wide audience. You mentioned at the end of your last podcast that the ME show will be back which is great news. :thumbup: I look forward to the next series. In the meantime, take good care of yourself - I do hope things improve for you.
 
Great heartening episode, Gary. I find it appropriate to quote Klopp (Liverpool manager) last night:

- the guys are f...... mental giants.

That could be said of the ones telling their story on the podcast and everyone facing and living with ME.

It’s not a big issue, but wish there maybe was one or two men besides our friend Grigor talking. Given the ratio of the disease, it is natural that it’s almost only women talking. And a couple of mothers do talk on behalf of their sons, so that is good. So to be fair, this actually may be close to reflecting the women/men ratio. Nice work.

More general: when making things on ME, the picture often turns out quite one-sided. Aware that this often is out of control of the ones making it, whether it is a written piece, podcast or whatever. They may have thought about this and tried, but for different reasons not succeeded in getting men “out in the open”. Men are probably hiding to a greater extent. So you have the factors of ratio and hiding often making the picture a little skewed.

We do know that there obviously are good representatives of men out there. So for the future, I hope that the ones making different things are aware of this and try to balance this in the best possible way. Just think we have some work to do on the myths of “only women disease”, “good-girl syndrome”, or whatever goes around. ME could and does impact anybody, and that is an important message. So guys, we have to step it up! But this is delicate. Can only speak for myself, but think many of us are past the state of being ashamed of ME and trying to silencing everything about it.
 
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