I’m much later in sharing news of this project than I’d hoped, but sometimes migraines, brain fog, PIP reviews, buggy iOS WordPress apps and Christmas preparations get in the way. As a result, a series of blog posts I had planned for November and December are not going to happen until 2022, apart from this one, the first post of the series. It’s less comprehensive than I had originally planned but I want to introduce this project to any members of the ME community who haven’t yet heard about it and would like to participate.
I’ve long had an interest in how to describe my ME symptoms, that’s in part why I began my blog, to communicate with the people in my life about how my ME affects me in the best way I know how. My trademark, it seems, is that I use many words to do this!. My posts are known for being on the lengthy side – it did take me over four thousand words in Post Twenty Seven to explain that “No, I’m Not Tired”!
One of my favourite comments I’ve received in response to my blog was about that very post; “Faultless and extremely comprehensive. Amazing though that so many words have to be used to explain the difference between fatigue and some other experience that probably doesn’t yet exist in any dictionary: hence, the art of description is a key aspect of this author’s triumph.“. I felt happily validated in my wordiness by that comment!
That is essentially what this project is about, how we, people with ME, describe our experience of this illness.
The UK charity Action for ME are inviting people with ME to complete a questionnaire, created by Scottish poet, artist and writer Alec Finlay, to describe their experience of having ME. The responses will be collated by Alec who will select the most expressive phrases, without altering them, to create a collective patient-led description of ME in the form of a found poem – a poem created using words or phrases that have been selected and rearranged from another piece of text. The final text will be published as a book and made available online, as a downloadable PDF, and an audio recording.
“The aim of the poem is to touch people, but also to be easily comprehensible for people with severe pain, fatigue and attention deficit.”
Alec himself has had ME for over thirty years, and after contracting Covid-19 early in 2020 he’s been living with Long Covid as well. He has written extensively on his own experience of chronic illness and disability, beautifully, I might add, examples of which I shall share at the end of the post. Alec also has a history of engaging with the public in the creation of his work, an example being Scotland’s Covid Memorial, using the theme of I remember, for which he is the lead artist.
“Alec is one of the most sympathetic and innovative voices in ME/CFS right now – I’d encourage anyone reading this to participate in this project. You will be amazed at the poetry he will create with your descriptions and experiences.”
I believe this project is of great value, and what makes it so unique is both the collaborative approach, the union of ME patient(s) and poet, and the creative/artistic approach.
There are a lot of existing descriptions of ME:
Clinical and medical descriptions – by ME charities and departments of health, many of them written by people with no experience of ME and are therefore unable to convey the dailiness of ME. These descriptions focus on a few select common symptoms, though they often miss out the defining symptom of ME, Post Exertional Malaise (PEM – the worsening of symptoms after exertion) and they rarely mention the lesser known symptoms, the odd little things that we notice going wrong with our bodies. The Ramsay definition is the only clinical description I’ve seen that incudes the very specific symptom of clumsiness, for example, yet none of them are able to really express the daily experience of ME, the emotional experience.
Personal descriptions – written by individual bloggers like myself, which are of value, but the ME experience varies, my own description won’t necessarily be your description.
What we’re missing, and what this project will give us, is a collective description created entirely by people with ME that speaks to us all, something that we can each connect to emotionally that fully expresses what it’s like to have ME. It will do so, not in cold detached clinical terms, but in terms that we can all recognise and understand, with our own words and phrases expertly and beautifully sewn together by an experienced and skilled poet. I believe that it is truly a unique project.
“The project will represent the experience of chronic pain, quoting the words of affected people. ‘Descriptions’ is concerned with representation: it seeks to overcome the persistent issues that disadvantage and isolate people with so-called invisible illnesses; to give an active voice to those who experience these conditions – to make their pain visible.”
To gather our experiences, Alec created a questionnaire which consists of thirty five questions in the following seven categories:
Before you had ME.
Diagnosis and at the beginning.
Impact on your life.
Medical treatment and self management.
Describing ME and its impact on your life.
ME and what needs to be addressed by others.
“The project will use an innovative questionnaire to enable participants to reflect in-depth on their ME and describe its symptomology and effects. The responses provide a detailed description of the disease composed from the words of people with ME. Rather than repeating quantitative or clinical questions, we will seek detailed descriptions, reflections and stories.”
The questions are spot on, designed to fully capture the ME experience. They are thought provoking and unlike any other questions I’ve encountered in a survey on ME. Participants are encouraged to be as descriptive as they like, and there’s no expectation that all the questions be answered. It’s a long questionnaire and participants can answer as many or as few questions as they are able to, in as many or as few words as they wish. All the contributors will be credited, if they choose to leave their name, but none of the text will be identified to an individual.
The questionnaire can be accessed via the Action for ME website here where you have the option to complete it online or in a downloadable PDF. The deadline is Friday 31st December 2021 – soon, I know, I’m sorry!
Why it interests me.
I discovered Alec’s work in July this year after seeing his name mentioned in a Facebook post about an interview he did for a podcast on Long Covid. I read the transcript of the interview and found that I could relate to everything that he said. That led me down an Alec Finlay rabbit hole and the more I read, the more understood I felt. I read somewhere (but I forget where) that in response to his work, people often express to him a sense of relief that their symptoms have been described in a way that they can relate to emotionally, and that was certainly my experience.
I was so moved by Alec’s work that I wrote to him in an email and we’ve since remained in contact. We often discuss our symptoms, both taking an interest in how we describe them. It was in reference to our shared experience of the NHS’s lack of understanding of the daily experience/reality of ME that Alec shared with me his idea for Descriptions. I recognised the value in it immediately and offered to assist in any way I could.
Alec shared the draft questionnaire with me for my feedback and I thought that the best way to critique the questionnaire was to complete it myself, so I ended up doing a trial run in advance of the launch by Action for ME, sharing my suggestions with Alec along the way.
I already knew I wanted to blog about the project but it was only when I started answering the questions that I knew what angle I wanted to take. My reaction to the questionnaire took me by surprise. The questions forced me to think about my ME in ways I hadn’t done before. When thinking about how having ME has affected various aspects of my life, I realised that I had to separate the changes to my lifestyle from the changes to myself. I actually had a few revelations along the way and it ended up being an incredibly worthwhile and cathartic exercise for me.
I found the experience so interesting that I realised I wanted to share my answers to the questionnaire in a blog post. My answers however came to 9000 words (oops), so rather than one ridiculously long post, I’ll be sharing them in a series of shorter posts based on the categories of the questions. In each post, as well as my answers, I’ll share some of the thoughts I had along the way.
I would really encourage my fellow ME people to participate, if you haven’t already. Not just for the opportunity to contribute to such an innovate and creative project, but for what it could do for you personally.
Sharing this in the midst of the festive season and so close to the deadline isn’t ideal, I know. It’s a difficult time of year for people with ME, with the expectations, the energy it demands of us, the loneliness for those who are unable to join in, and of course the emotional toll of it all. It’s also a lengthy questionnaire and with so little time before the deadline it will be impossible for some to complete, but if just one or two questions in particular catch your eye, it’s perfectly ok to only answer those.
I’ll leave you for now with possibly my favourite of Alec’s poems, from his essay, On Not Walking. I could probably write an entire blog post on why this little poem is so important to me, and I may well do that one day.
Illness is not more or less health Illness is a new mode of life
My request for the band Suede – please help to make live music accessible for your disabled and/or chronically ill fans who live in permanent lockdown.
I have a request for the music industry. I would like bands to start live streaming at least one performance from each tour, as standard. Not just in times of Covid, but always.
I’m kicking off my campaign (if I can call it that – so far it’s just me screaming into the void) with the band Suede for no other reason than timing. They just happen to be the band taking up the most space in my head at the moment, because they’re who I’d next be seeing live, if I were able to.
I was a teenager in the 90’s and I was obsessed with Britpop, a British music and cultural movement that grew out of a desire to place the spotlight on British indie music over the American grunge scene. Looking back, I actually have some reservations about Britpop, not with the music, which at the time I felt had saved me from my tween self whose musical tastes were, questionable, but with the movement as a whole. I didn’t recognise it back then, but now I see the nationalistic overtones, the whole ‘Cool Britannia’ thing that was so embraced by Tony Blair and New Labour, which gives me the cringe, and the overwhelming whiteness and maleness of the scene, it doesn’t sit quite right with me anymore. So while the movement may have been, in Brett Anderson from Suede’s own words, “…a laddish, distasteful, misogynistic, nationalistic cartoon“, and I think we can agree it’s best left in the past, I am still very fond of a lot of the music from the time.
Despite my fondness for the music though, I rarely listen to it anymore, not unless I’m feeling particularly sentimental. The one exception is Suede. Suede I listen to not for the sake of nostalgia, but simply because they’re great. Their last three albums, since they reformed after splitting up, have been sensational, with their last album being, in my opinion, an absolute masterpiece. Unlike many bands who seem to get a bit lost the further away they get from their heyday, Suede, since their comeback, have been consistently strong, it could be said that they just get better with age.
My current top five albums in no particular order:
Click on the album titles to listen to these on Spotify.
As a young teenager I’d heard of Suede, but it wasn’t until the release of their third album, Coming Up, that I really got into them, which happens to have been twenty five years ago this month, and I was sixteen years old. My friends and I had managed to obtain almost complete control over the jukebox in our high school canteen, and I still can’t listen to the song ‘Trash’ from Coming Up without flashbacks to our usual lunch table, next to the jukebox, obvs!
Despite Suede featuring heavily in the soundtrack of my teenage years, for some reason I never saw them live, and I have no idea why. I had pretty relaxed parents who were happy to let me go into Edinburgh or Glasgow, even on a school night, to go to gigs, usually at the Liquid Room or the Glasgow Barrowlands. My friends and I always got there early to be at the front of the queue to ensure we got a place right at the front by the barrier. I’ve held many a sweaty hand of various Britpop singers, and I almost always managed to get hold of one of the setlists that had been taped to the stage floor. I have so many wonderful memories of the gigs I went to in the 90’s, but none of Suede, and that’s something I really regret.
With that in mind, it perhaps wasn’t surprising that when Suede announced a tour to mark the 25th anniversary of the release of Coming Up, I excitedly booked a ticket. I’d finally get to see them live, and I’d get to relive the 90’s with the promise that they’d be performing Coming Up in full. There’s a bit of problem though… I have severe ME and I’m predominantly housebound.
So why did I do it? Because I’m addicted to my old life, the life I had before ME. The desire to do the things that make me happy never went away. All I could focus on was the idea of getting to see Suede perform the album that I first discovered them with, and my natural instincts kicked in.
I’m not completely detached from reality, I was fully aware that I may never get to use the ticket. When a situation like this arises though, I can’t help but make myself believe that a spontaneous and miraculous recovery isn’t completely out of the question, and I certainly can’t go if I don’t have a ticket. That’s how I manage to justify it.
But after the anticipation, buzz and excitement of securing a ticket, comes the depression and anxiety as I scold myself for being stupid enough to put myself through this again. Because I’ve done this before. It turns out that I have a pattern when it comes to this particular situation…
I see an announcement about a concert that I’d like to attend and…
I check when the tickets go on sale.
I check the dates of the concert to ensure I don’t have a hospital appointment that week.
I go to the venue website to check out access and look for the seating plan to find out where the wheelchair spaces are.
I look to see if I’ll be able to book a wheelchair space online but somewhat ironically accessible tickets are never available online (ahem, accessibly), so I email the venue to ask how I go about booking an accessible ticket and hope they reply before the tickets go on sale and sell out. *I can’t call them because speaking on the phone triggers my migraines and I already average eighteen migraine days per month.
I find out where the closest accessible parking to the venue is and check that I can use my Blue Badge there.
I find someone who can drive me and accompany me using the free companion ticket that tends to come with an accessible ticket.
I check the refund policy, because it’s not like I can sell a wheelchair space on Gumtree and there are always so few wheelchair spaces that I want to give someone else the chance to buy it if I can’t go.
If, by the time I have all the information I need (which can take a few days because this stuff is never made freely available on their website and emailing back and forth takes time) and the tickets haven’t already sold out (which has happened), I book my ticket(s).
I spend a long time hoping I can actually make it this time. Every time I don’t crash as badly as I think I will, or I don’t have a migraine when I usually would, I start to wonder if my ME is improving.
But inevitably I conclude that I won’t be able to go, so I contact the box office and either get a refund or lose the money.
My mental health will then suffer as my heart aches for everything I’m missing and I’ll feel increasingly resentful of all the people who have the privilege of being able to do the things they want to do.
I’ll tell myself to never do this again.
I’ll do it again, because life is just too tempting.
This pattern that I follow is driven by my longing to live my life as I did before ME, and even after seven years, letting go of that is not as easy as you might think. Saying that, if you found it difficult not being able to do the things you usually enjoy during lockdown, then you may well have an inkling of understanding. The longer it goes on doesn’t make it any easier by the way, well it hasn’t for me.
So this is exactly what I did when Suede announced their Coming Up anniversary tour. It was originally meant to be in October 2020 but Covid forced them to reschedule, which they did for April 2021, and then Covid forced another change of date, to November 2021, performing at The Usher Hall in Edinburgh on 3rd November.
I might have been the only person who was delighted by the repeated postponement of the tour, because the further away it was, the longer I would have for my miraculous recovery. Now it’s less than two months away, and I won’t be going. That’s pretty much a complete certainty.
The day of the concert will be difficult for me. I’ll have to avoid social media so I don’t see photos or mentions of the concert – deliberately isolating myself even further than I already am in order to shield myself. Then afterwards I’ll be too sad to listen to Suede for a while because it will remind me of missing the concert, and everything else that I’m missing because of this illness.
Online events don’t have to be just for lockdown.
However, there is something that Suede could do to save me, and others like me, from this cycle of emotional trauma. With every tour they go on, they could live stream one of their performances, for a fee, if they wish, I’d pay for a virtual ticket, to allow their housebound fans to participate in the live music experience.
If I knew from the beginning that attending the concert virtually was an option, it would save me from repeating my ridiculous pattern, the crushing disappointment that it always brings and the subsequent crash that my ME will suffer.
My hope is that the live stream would also be made available to tickets holders for a time after the initial event as well. This would allow those of us with energy impairments and/or fluctuating conditions time to watch it after the live stream, or in short chunks over a few days, if that’s what we need.
Importantly, I would also hope that when the band address the audience, they include those of us at home. This would give us a sense of belonging, allow us to feel included, part of the experience, and as valued as the audience that they see standing right in front of them.
Of course it won’t be the same as attending a concert in person, there’s no substitute for the energy or the atmosphere, but it’s the best doable solution that I can think of. It will go a little way at least in closing the gap between live music fans who are housebound due to disability and/or chronic illness, and the bands that they love.
What I’m proposing isn’t particularly radical, but it’s something that we all know can be done, lockdown taught us so. So now it’s just a matter of, do Suede and the music industry at large want to make their live shows accessible to housebound fans? Yes or no?
I’ve tried to make contact with Suede’s people in the hope they would offer to trial my idea on the upcoming tour, but they’re proving to be impossible to reach, or at least impossible to elicit a reply from. I tried Twitter and Facebook, and heard nothing. I emailed the manager of Suede’s fan club, The Insatiable Ones, and asked if they could help. They liked my idea and forwarded my email to the band’s management, but they didn’t respond.
I genuinely thought that my proposal might be something that Suede would consider. Last year, to compensate for the postponement of the tour, they regularly shared old live performances on YouTube. So they do seem to recognise the value of making their music accessible, but sadly it seems that this was only for the time when it primarily benefited fans who were temporarily stuck at home. When it would primarily benefit disabled fans who are permanently housebound, it seems it’s less of a priority.
“…people seem unable to acknowledge that everything they’ve found hardest about the last year is just a way of life for many of us. And now they’re “back to normal” and it feels like we’re forgotten and left behind all over again. It’s hard.”
At the start of lockdown it was heartwarming to see how communities rallied to support their vulnerable neighbours, and how society opened up and offered online opportunities that disabled people have dreamt of for years. I’d hoped that this new more accessible society would stick around, but now that non-disabled people have decided it’s time for life to go back to ‘normal’, there’s been a noticeable shift in attitudes towards vulnerable/disabled people. This is something that I’m finding incredibly difficult to witness, traumatic even, to see the world opening back up for most people, while closing down again for disabled people. Knowing that access to such events was always possible, but that it was only done (mainly) for the benefit of non-disabled people, for the short time they needed it, really stings.
My guess as to why this is happening is that disabled people just aren’t high on non-disabled people’s radars, if at all. Unless someone is disabled themselves, or they care for a disabled family member, or they work for a disability organisation/charity, generally speaking, people don’t tend to consider disabled people.
The last concert I went to was in Reykjavík, Iceland, in December 2017. As I was planning the trip I asked in an Iceland travel based Facebook group if anyone could tell me the rough cost of a taxi from the bus terminal to the street where my Airbnb was. I made it clear that I’d been to Reykjavík many times before and I knew it was a short distance. These are the replies I got…
“If the weather is good and you don’t have a lot of luggage walking is easy.”
“I would walk both trips with ‘the long way around’…Plenty to see and feel if eyes and heart are open.”
“You can walk there. It’s about ten minutes.”
No one considered the fact that I was asking this question for a reason. No one considered that I would need to take a taxi (for what I acknowledged to be a short distance because I’d been there before) because I am disabled. They all assumed that walking was an option, even when I’d given them a pretty big hint that it wasn’t. For the full story of this little holiday read Post Twenty Three. Wheelchair’s First Holiday.
Perhaps this ableist attitude stems from the fact that disability tends to be a foreign and scary concept for most people. They hate to think that it’s something that will ever touch them, so it’s easier to pretend it’s not there at all, but disability can happen to anyone. It’s the one minority group that anyone can join, it could happen to you tomorrow. It doesn’t matter how healthy you are, how much yoga you do, how many wellness blogs you subscribe to, how many vitamins you take, or how ‘clean’ your diet is… whether through an accident or injury, genetics or bad luck, you could become disabled one day.
Disability is not as far away from most people as they think it is, so it’s best not to pretend it’s not there. Instead, acknowledge it, welcome it, and be active in creating a more accessible world. Then if you yourself one day become disabled, you’ll have far more equal opportunities to participate in society than those who came before you.
The Social Model of Disability
The model says that people are disabled by barriers in society, not by their impairment or difference. Barriers can be physical, like buildings not having accessible toilets. Or they can be caused by people’s attitudes to difference, like assuming disabled people can’t do certain things.
The social model helps us recognise barriers that make life harder for disabled people. Removing these barriers creates equality and offers disabled people more independence, choice and control.
Sadly it’s a common attitude of non-disabled people though, that disabled people have no interest in the world around them. That we aren’t well-rounded autonomous human beings with hobbies, interests and passions, just the same as non-disabled people. So they have little in the way of motivation to make the changes that would allow disabled people to fully participate in society.
The only reason I can think of why live-streaming events isn’t the norm, outside of a pandemic, is because the people who make events have simply never considered that there’s an audience. Either they genuinely don’t know that housebound people exist, or they they fall into the camp of “why would disabled people want this?”. They’ve been so well conditioned by a society that dehumanises disabled people, that they don’t realise that disabled people crave joy and variety from life as much as they do.
“And perhaps that’s part of the problem. Cultural prejudice around disability means it is still too often assumed that disabled people do not actually “have a life, just like anyone else”: that they don’t have careers, relationships, interests or children.”
We’re lucky to live in a world in which the knowledge and technology exists to allow online access to events, so why aren’t we fully embracing it? Thanks to lockdown we all understand the value that it brings, so why wouldn’t we want to open up the world and bring joy to those who are forced to live in permanent lockdown?
I don’t know how to reach them.
While I had little luck with Suede’s management, I’m wondering if I’d have better luck with the band members themselves.
I could really do with this blog post somehow falling into the laps of Brett Anderson, Neil Codling, Simon Gilbert, Richard Oakes and/or Mat Osman. I don’t have a clue how to make contact with them though, not with the impenetrable wall that is their management standing between me and them.
So please PLEASE share the crap out of this post!!!
On the remote chance that I can make contact with Suede and they agree to trial my idea, I’m hoping I can use that as a launch pad to start a proper campaign, and have other bands/artists/musicians follow suit.
It would make me deliriously happy if this could happen in time for the Coming Up tour, but I expect it’s too late now. I believe they have a new album in the works though, so maybe then…
I’m quite sure that Suede have the power to make this happen. I can only hope that they value their invisible fans enough to be the band who lead the way in improving access to live music.
Wouldn’t that be a tremendous thing!
UPDATE – Friday 17th September
After publishing this post (on Tuesday 14th September) I contacted Suede’s manager directly (I managed to correctly guess his email address!) to explain my situation and I included a link to my blog. Yesterday I received a lovely reply.
It was a really encouraging email.
He likes the idea a lot and he understands how inclusive and significant it would be for the band’s disabled/housebound fans to be able to access Suede’s live shows via a live stream.
As I suspected it’s too soon to be able to make it happen for the Coming Up tour in November, but he and the band’s tour manager are discussing how they might be able to make it work for future tours. Though they can’t make any guarantees.
Overall I felt it was a really positive response.
He also commented on how well I explained my situation regarding gig-going, how well written it was, and that I got my message across incredibly well, which was very kind of him.
I’ll share any further updates if/when they happen.
For my personal ‘best of Suede’, click here to take you to a Spotify playlist I made recently for a friend. It’s in chronological order and includes 1-3 songs from all but one of their albums, and 2 b-sides. All of my favourites!
Wednesday 18th August 2021 was meant to be a good day. It was meant to see the publication of the long awaited review of the NICE guidelines on the treatment of ME. It was supposed to be a new beginning. The beginning of a future in which people with ME would be taken seriously.
NICE are the National Institute for Health and Care Excellence, the English public body who provide guidance on the appropriate treatment and care of people with specific diseases and conditions. An English organisation, but they also have influence over the Scottish Good Practice Statement, the Scottish version of the NICE guidelines.
“We are going to tear it up and start again. We won’t allow it to look the same.”
When NICE announced that they were going to review the ME guidelines, I was sceptical, but as I learned more about the review process, and heard what the Director of the Centre for Guidelines had to say, I began to trust them. I trusted that they were going to do right by people with ME.
The old guidelines would unfortunately remain in place until the review was complete, but there was hope that the current recommended Cognitive Behavioural Therapy and Graded Exercise Therapy (CBT/GET) would eventually be scrapped.
These therapies are based on the now discredited theory that ME is not a physiological illness, but a psychiatric condition in which patients have ‘false illness beliefs’. We ‘believe’ we are unwell, we ‘believe’ that we have an intolerance to exertion, and as such we fear exercise and become deconditioned.
The idea behind the therapies is that CBT can cure us of our false illness beliefs, then we undertake a programme of GET to gradually increase our activity, and recover.
This was supposedly proven in the now discredited PACE Trial.
The PACE Trial is the basis on which the NHS ‘treat’ ME. It also impacts heavily on clinical policy abroad, both in terms of government funded healthcare and the private medical insurance industry. Due to the influence of the trial’s authors, funding of ME research in the UK has primarily been poured into psychiatry, rather than much needed biomedical research. Misconceptions about ME already existed, but the PACE Trial cemented these into the minds of the government, the medical establishment, the media and the general public.
The results of the trial were published in 2011. PACE found that patients being treated with CBT/GET over a six-month period improved by 60% while the recovery rate was 20%. However, thanks to a Freedom of Information request by a group of ME patients (which involved a drawn out five year legal battle with the PACE Trial authors spending £200,000 in an attempt to stop the data from being released) it came to light that the researchers changed midway through the trial what constituted as improved and recovered. Participants could end the trial being more unwell than when they started, yet they were still categorised as recovered. The authors basically manipulated the data to reach the conclusion that they wanted. When the authors were forced to release the raw data, new analysis found that patients actually only experienced a 20% improvement, and only 5% could be considered as recovered. Would a pharmaceutical intervention with such low odds be approved for use?
Uniquely for a clinical trial, and very strangely, the PACE Trial was partially funded by the Department for Work and Pensions (DWP), the UK government department for sickness, disability and pension benefits. Is it a coincidence that the PACE Trial is often used to deny ME patients disability benefits?
It’s also worth noting that the trial used the Oxford criteria for the diagnosis of the participants, which is widely considered to be overly broad and it doesn’t include the cardinal symptom of ME, Post Exertional Malaise (PEM), an intolerance to exercise/exertion. Rather, it lists fatigue as the main symptom. Furthermore, research has shown that for every fifteen patients selected under the Oxford Criteria, fourteen will be false positives when compared to the more up-to-date and robust Canadian Consensus Criteria. So we don’t even know how many of the trial participants had ME to begin with.
Thankfully, the truth came out, and while the trial hasn’t yet been officially retracted, it is widely discredited. It’s even being taught at the University of California, Berkeley, as an example of how not to conduct a clinical trial. Very embarrassing for the trial’s authors!
“I think that when the full details of the trial become known, it will be considered one of the biggest medical scandals of the 21st century.”
As if the bad science wasn’t enough, it gets worse. It turns out that the PACE Trial authors failed to disclose a conflict of interest. The main investigators of the trial had financial and consulting relationships with disability insurance companies, advising them that rehabilitative therapies like CBT and GET could help ME claimants get off benefits and back to work. They gave the medical insurance industry a reason to withhold payouts – a condition of the payout would be that the ME patient undergoes a GET programme, which many refuse to do as they know it would make them worse. So, it’s not surprising why the trial authors have such a vested interest in keeping these therapies in the NICE guidelines.
The proponents of CBT/GET have nothing but contempt for ME patients. They believe us to be ‘malingerers’, that we perpetuate our false illness beliefs for ‘secondary gains’. Meaning, they think that we benefit from having a disability in terms of what we can gain from it: social security/benefits, equipment, accommodation, support, care and attention from family and friends, a good excuse to avoid things we don’t want to do, and my favourite, apparently we enjoy the ‘social mystique’!
Now that I think about it, of course these gains make up for the loss of my career, having to sell my beautiful flat in Edinbugh, having to withdraw from my dream-come-true of spending four months living and working in Antarctica, the loss of friendships, the loss of income, my loss of self-worth and sense of purpose, the pain, the chronic migraines, the comorbidities, the loss of my fertility, the loss of my strength, fitness and stamina, not being able to participate in my hobbies, the food intolerances, the isolation, the loneliness, the anxiety, the fear, the depression, the suicidal ideation, the loss of my freedom and independence, the stigma, the ‘yuppie flu’ jokes, the intolerance, the ableism, the discrimination and the inaccessibility. Yep, I’m good with these, because never mind Antarctica, all I’ve ever wanted is to have my sole income be at the mercy of the grotesquely inhumane DWP, and don’t forget my ‘social mystique’.
One of the cardinal symptoms of ME, in fact, THE cardinal symptom of ME is exertion/exercise intolerance. This is backed up by science – people with ME have a pathological inability to produce energy on demand at a cellular level. Research has found immune cells taken from the blood of people with ME show clear signs of low energy production. Simply put, if exercise makes you feel better, then that in itself rules out an ME diagnosis.
CBT and other talking therapies can be helpful to support ME patients as they learn to cope with having a chronic illness, but in the context of the NICE guidelines, that is not the manner in which CBT is currently recommended. It also seems that GET may be an effective treatment for some conditions, but not only is it ineffective for people with ME, it’s dangerous.
For ME patients, GET is “extremely barbaric” and “government sponsored malpractice”.
Ron Davis, Professor of Biochemistry & Genetics and Director of the Stanford Genome Technology Center at Stanford University, and the Open Medicine Foundation’s Scientific Advisory Board Director, speaking at an Emerge Australia research symposium.
There is a long history of GET harming people. So many stories around the world from adults and children whose ME worsened after GET. People who could walk pre-GET but required a wheelchair afterwards. People who previously had a life outside of their homes but became bedbound. People who knew GET was harming them but were forced through it in order to access benefits or medical insurance payouts. GET has forced young adults with no alternative support system into care homes for the elderly. GET has stripped people of what little quality of life they had. GET has caused Post-Traumatic Stress Disorder (PTSD). GET has caused permanent and severe disability. GET has resulted in loss of life. There’s no official record of this though. Unlike with pharmaceutical interventions, in which (in the UK) we can report side-effects through the Yellow Card Scheme, there is no official channel to report the harm caused by these therapies. So all the evidence is anecdotal, and for some, that’s not proof enough.
After decades of GET being forced upon ME patients, after all the harm that has been caused, we finally began to believe that things were going to change. In November 2020 NICE released the draft of the new guidelines, and the ME community were collectively delighted to find that GET was to be scrapped, and that CBT should only be used to help patients cope with having ME. This was monumentous news. ME patients in the UK were no longer going to be harmed by this dangerous practice, and it would hopefully also influence ME guidelines worldwide.
“Do not offer people with ME/CFS: any programme based on fixed incremental increases in physical activity or exercise, for example Graded Exercise Therapy.”
Excerpt from NICE Draft Guideline
“Only offer cognitive behavioural therapy (CBT) to people with ME/CFS who would like to use it to support them in managing their symptoms of ME/CFS and to reduce the psychological distress associated with having a chronic illness. Do not offer CBT as a treatment or cure for ME/CFS.”
Excerpt from NICE Draft Guideline
“Recognise that people with ME/CFS may have experienced prejudice and disbelief and feel stigmatised by people who do not understand their illness.”
I think we were all fairly confident that this would make it into the final guidelines, and the date for publication was set for Wednesday 18th August 2021.
Then on Tuesday 17th August 2021, NICE released a statement…
NICE pauses publication of updated guideline on diagnosis and management of ME/CFS
NICE has today (17 August 2021) taken the decision to pause publication of its updated guideline on the diagnosis and management of myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS).
The guideline recognises that ME/CFS is a complex, multi-system, chronic medical condition where there is no ‘one size fits all’ approach to managing symptoms. The causes of ME/CFS are still poorly understood and because of this there are strong views around the management of this debilitating condition.
Because of issues raised during the pre-publication period with the final guideline, we need to take time to consider next steps. We will hold conversations with professional and patient stakeholder groups to do this. We need to do this so that the guideline is supported.
NICE has used its usual rigorous methodology and process in developing this guideline but despite the best efforts of the committee, that followed these to the letter to bring together the available evidence and the real, lived experience and testimony of people with ME/CFS, we have not been able to produce a guideline that is supported by all.
We want to thank everyone who has contributed to this guideline and particularly the committee and the patient groups who have worked so diligently. However, unless the recommendations in the guideline are supported and implemented by professionals and the NHS, people with ME/CFS may not get the care and help they need.
In order to have the desired impact, the recommendations must be supported by those who will implement them and NICE will now explore if this support can be achieved.
We all knew that not all medical professionals were on board with the removal of CBT/GET. Not because they have ME patient’s interests at heart, but because there are some very influential people with a vested interest in keeping CBT/GET in the guidelines. Disappointingly it now appears that NICE are bowing down to pressure from within the medical establishment. This isn’t about science, or evidence, or medicine, it’s about politics, and perhaps even nepotism.
I knew there would be significant push back from certain parties. Before NICE released their statement on Tuesday I posted on Twitter…
“How long until Wessely, Sharpe & co publicly push back against the new NICE guidelines? They’ll be desperately trying to save their professional reputations in the wake of NICE formally denouncing their life’s work on #MEcfs.”
I didn’t expect it to happen QUITE so quickly, I Tweeted this less than three hours later…
“Well, right away it seems. I can’t think of any other reason why @NICEComms are now delaying the publication of the new guidelines, other than the interference of Wessely, Sharpe & co. NICE are not above corruption, it seems.”
In my Tweets I mention Simon Wessely and Michael Sharpe, both of whom are amongst those with the vested interests.
Simon Wessely is a British Professor of Psychiatry at King’s College London. He helped develop the cognitive behavioural model of ME/CFS, a rehabilitation-based model in which unhelpful thoughts and avoidance behavior are believed to perpetuate the symptoms of ME/CFS, and he helped design the PACE Trial. Wessely believes ME/CFS to be a ‘general disorder of perception’.
Michael Sharpe is a British Professor of Psychological Medicine at St Cross College, Oxford University. Sharpe was author of the Oxford ME/CFS diagnostic criteria, he helped develop the cognitive behavioral model for ME/CFS and ‘medically unexplained symptoms’, and was one of the principal investigators of the PACE Trial, along with Peter White and Trudie Chalder.
Wessely, Sharpe, White and Chalder are some of the UK’s biggest CBT/GET proponents. They are responsible for CBT/GET being in the NICE guidelines to begin with, so of course they don’t want them to be scrapped. As well as screwing up their relationship (and cash flow) with the medical insurance industry, it would essentially mean that NICE were formally denouncing their life’s work on ME. It would leave their professional reputations in tatters.
It is believed, though I don’t know if confirmed, that that the medical establishments at the heart of the above mentioned backlash are the Royal College of Physicians, the Royal College of Paediatrics and Child Health, and the Royal College of General Practitioners. Now, what is it about the RCGP, oh yes, their President is Dr Clare Gerada, wife of Simon Wessely.
It’s also interesting to note that just two weeks (or so) before the publication date three members of the NICE guideline review panel suddenly quit. They were known proponents of CBT/GET (the panel included professionals both for and against for the sake of balance), and seemingly they quit because they didn’t support the new guidelines. Of the three who quit, two of them work as clinical leads for ‘fatigue services’ in the UK and the third is a senior physiotherapist at another similar service. All of these services of course offer CBT/GET as treatments, and I’m guessing that if they are scrapped, these three will be out of a job. Is that not a huge conflict of interest?
It is my belief that it really doesn’t matter if not all doctors are behind the new guidelines. Presumably not all doctors were behind the last lot of guidelines, but NICE went ahead and published them. NICE are there to provide guidance to the NHS, they don’t take their orders from individual doctors or medical associations. They should not allow themselves to be dictated to by a handful of rotten doctors who don’t care a jot about ME patient welfare. So I say, publish the new guidelines anyway and THEN deal with those who refuse to implement them, perhaps by removing their privilege to practice medicine?
Some argue that by removing CBT/GET from the guidelines we’ll be left with nothing, no recommended treatments. GOOD! No treatment is better than a harmful treatment. How anyone is unable to grasp this is beyond me. Even without a treatment there is still plenty that NICE can do to guide the NHS. They can guide GPs on how they can best support their ME patients, how to manage symptoms, to advise their patients to rest and pace, how to support patients who are severe/very severe, when to offer home visits, how to handle hospital admissions, how to support disability benefit, Blue Badge and social care applications, etc. Removing CBT/GET doesn’t mean we’ll be left with a blank page where the guidelines used to be. Even if it did, that would be infinitely better than guidance that knowingly harms patients. The removal of CBT/GET will also pave the way for future funding of biomedical research, because the government will no longer be able to deny funding for research with the excuse that ME already has ‘treatments’.
I have so many questions rolling around my bewildered head…
Have NICE ever bowed down to pressure from medical professionals upon the pending release of guidelines for any other condition?
Why aren’t they standing behind their own procedures?
Do they not have confidence in their own investigative process?
Why spend over three years studying the evidence, come to a solid conclusion, only to back down the day before?
NICE previously reported that the evidence used to back up CBT/GET to be of “low” or “very low quality”, so why change their minds now?
What new evidence came to light in the hours before publication?
Are they saying that the last three years of work were a waste of time?
Are they worried that Wessely, Sharpe & co are going to take legal action, and they’re buying time to plan their defence?
Instead of coddling a group of tantruming ME sceptics, shouldn’t they focus on doing what is right by the ME community – a community who they acknowledge has historically experienced prejudice, disbelief and stigma by people who do not understand ME?
Why are they so overly concerned about pleasing all of the medical professionals at the expense of patients?
Why are ME patients not their priority?
Since when did the practitioner of the therapy trump the needs of the patient?
Why are the people who are responsible for harming us still being allowed to influence our healthcare?
Are NICE exceedingly weak, or are they corrupt?
The ME community need answers. NICE owe us transparency. So many ME patients gave their time and energy to inform the new guidelines, filling out questionnaires, sending evidence of harm caused by GET and encouraging others to do the same. In fact NICE received 4000 responses to their consultation, which they said was “significantly higher” than usual. As such they had to delay publication of the final guidance by several months to give themselves time to consider them. I think many of us appreciated that they were taking the process so seriously and we’ve waited patiently. But now, after all we’ve given, all we’ve been through, the trauma of having such a maligned illness, the gaslighting we’ve endured, we deserve the truth. They can’t leave us here, abandoned, dangling in limbo, having no idea what our future holds.
So many of us were ‘living’ for this moment. I have told myself previously, on occasions when I’ve felt suicidal, that I must wait until the NICE guidelines review. I mustn’t do anything permanent, not yet, not when there’s hope that attitudes towards ME may change. I had to hang on, at least until the publication of the new guidelines. I don’t feel the same now, but there are many who do. What do they do now? Keep waiting, indefinitely? ME patients have been waiting for change for decades, it has never happened, so why should we believe it ever will?
The ME community are currently devastated beyond belief. It’s been a long time since I’ve felt quite so dejected and let down, and by an organisation who told us they were going to help us. NICE gave us hope of a lifeline, then snatched it away in the final moments. Unfortunately this situation perfectly represents the way in which ME patients are used to being treated, with disdain, neglect, and a complete lack of care or respect.
“For many years, campaigners for psycho-behavioral interventions for ME/CFS have accused patients who objected to the research as being anti-scientific zealots. It was always a ridiculous charge, but developments this week have made it clear, if there was any doubt, that these entitled bullies are the ones immune to the actual evidence…”
“I feel frustrated and angry. The action of a small number of people who have persuaded the leadership at the Royal College of Physicians, the Royal College of Paediatrics and Child Health, and possibly other Royal Colleges, to put pressure on NICE to reconsider what had already been agreed by the guideline committee, is reprehensible…”
“@NICEComms has to decide whether it’s a science-based organisation, or whether it’s beholden to a lobby group that refuses to let go of dangerous and long-discredited quack “treatments” for ME/CFS. Its credibility hangs on the outcome.”
“Decision of NICE to delay publication of new guidelines for management of ME is a massive blow to patients & charities who have campaigned for better treatment. Have the three years NICE has spent on this been wasted? ME community deserves so much better!”
“Dear NICE, What new evidence was presented 24h before publication of the new ME/CFS Guidelines? Your draft guidelines said that quality of all 236 separate CBT/GET outcomes was “Low” or “Very Low”. To progress science & clinical care we need to see the evidence.”
“Unbelievable. A tiny cadre of powerful psychiatrists with their legacies on the line are stepping in to try to overturn scientific consensus and the advocacy of tens of thousands of ME patients. UK healthcare is just as broken as US healthcare, just in a different way.”
So technically it’s not a disability tax, but I am being financially penalised by Scottish Borders Council for two things that are completely outside of my control – one of them being my disability.
I shared the news of my new house in my last post, and while I’m delighted about it, it has resulted in an incredibly distressing situation regarding council tax. For non-UK readers – council tax is a tax levied on households by local authorities (of which mine is Scottish Borders Council) in Britain to pay for services in the community, it is based on the estimated value of a property and the number of people living in it.
For any new readers, I’ll start at the beginning…
I have severe Myalgic Encephalomyelitis (ME), a complex neurological disease involving profound dysregulation of the central nervous system, the immune system and dysfunction of cellular energy metabolism.
I first became unwell in February 2014 and in December 2014, at the recommendation of my GP and my employer, I had to stop working.I received my diagnosis of ME in March 2015, and in the summer of 2015 I had to move from my beautiful flat in Edinburgh back to my hometown Peebles. After my sick pay ended I couldn’t afford my mortgage and I was also struggling to live independently. By moving back to Peebles I could rent out my flat, which would cover my mortgage, and I would be closer to my mum, who is also my carer.
I had hoped that I would recover and eventually be able to move back to Edinburgh and continue living my life. Due to the steady deterioration of my ME though, I realised that this wouldn’t be happening, at least not in the near future. ME is currently incurable and there are no safe or evidence based treatments available. It’s a matter of managing my symptoms as best I can and just waiting and hoping that I improve a bit at some point.
My priority now is to plan a life that takes into account my severe ME, which means making my life as easy and comfortable as possible. So, in April 2019 I put my flat on the market. With the sale of my flat I would be able to purchase a more suitable home in Peebles. My current temporary accommodation in Peebles has been fine for the short term (the last four years), but I need a more suitable (accessible) home in which I can live for as long as I have severe ME, which could be the rest of my life.
I accepted an offer on my flat in May, and in the same week I found the (almost) perfect house in Peebles, a detached bungalow close to the town centre. I made an offer and it was accepted. I took possession of the new house in July.
The new house, as lovely as it is/will be, isn’t suitable (for me) in its current state, it needs some building work to make it accessible. Once the work is complete it should allow me to live in as much comfort as is possible with severe ME, which has me almost completely house bound and mainly bed/sofa bound.
I take my duty to pay council tax seriously and I was diligent in keeping Scottish Borders Council (SBC) up to date with my housing situation, in terms of council tax. I first contacted SBC on the same day that my offer on the house was accepted to confirm which reductions I would be eligible for as someone who is both disabled and living on a low income. I then contacted SBC again the day before I took possession of the house, to inform them that as of the following day, I would be the owner.
I thought that because the house would be unoccupied and unfurnished while the building work was going on, I would be exempt (as is usually the case) and would not have to pay any council tax for up to six months, or until I moved in, if that happened sooner. I was wrong…
Email from Customer Advice and Support Services at Scottish Borders Council
“I have looked at the Council Tax account for this property and have to advise that under Council Tax legislation unoccupied and unfurnished dwellings are exempt for a maximum period of six months from the date the dwelling was last occupied. As the property has not been occupied since 24/03/2015 which is more than six months ago, you are not entitled to any exemption. However, as the property has been empty for more than twelve months, it has become liable for a Long Term Empty Levy of 200%. This levy will be applied from the date you purchased the property until the date the property is occupied.”
So, not only was I not eligible for exemption during this period, I was going to have to pay double the council tax. This was because the house had been empty for more than twelve months before I bought it (!!!), something that I was unaware of until after I took possession of the house. Apparently it didn’t matter that I had only just bought the house, because it had been empty since March 2015 (said SBC, more recently they have told me it had only been empty since March 2018), as the new owner, I would be financially penalised. I find it absolutely ludicrous that the occupation history of this house is somehow my responsibility. You would think they would reset the clock, so to speak, when the property changes ownership, but no.
I didn’t know the previous owner, but from what I gather, they went into care and then passed away, which is why the property was left unoccupied. Again, this is something I didn’t know until after I took possession of the house. I was in complete shock. I just could not understand why I was being held financially responsible for the (unintentional) actions of the previous owner.
I have been informed that this legislation exists to prevent people from purchasing property as an investment with the intent to leave the property empty, which isn’t ideal during the current housing crisis. I can understand this, it makes sense, but that is not what I have done. I in fact have taken an unoccupied property and am making it occupied. I am helping SBC to solve the problem that they are using to justify the 200% ‘Long Term Empty Levy’. I was also informed at the time that they have discretionary powers over the legislation, which led me to believe that I would be able to reason with them, have them see sense and not apply to levy to me. Later they denied this, I was told that they didn’t actually have discretionary powers over the legislation and they were simply acting withing the law. I should also note that this is a Scottish legislation, so I can’t even blame the Tories for this utterly ridiculous law.
SBC did inform me however that I could apply for a ‘structural repair discount’. If they deemed the work that I was having done to the house to be “major repair/structural”, I could apply for a 50% discount, taking the 200% back down to the normal rate. I applied for this discount and it was granted, but honestly, even this is unacceptable to me. It is not my fault that the house was unoccupied for so long. I am innocent. I have not left this or any other property unoccupied for over six months. I therefore believe that I should be eligible for total exemption for up to six months, as would be the case if the property had been occupied before I bought it. I have done nothing at all to merit this punishment.
What makes this all the more frustrating is that when I do move in, I will be eligible for various council tax discounts – banding reduction (I am disabled), single occupancy (I live alone) and/or council tax benefit (I am on a low income – ESA and PIP). This means that when I move in, I won’t be required to pay the full rate. But, while I’m in the process of making the house accessible, I am only eligible for the 200% to 100% discount, which hardly feels like a discount. It’s so unbelievably unjust.
Leaving aside the fact that I wouldn’t have needed to buy this house in the first place if I didn’t have severe ME… I am only having this work done so that I can live in the house. The house as it is, is not accessible for me. If for any reason this work could not have been done (I consulted with the builder before making my offer on the house) I would not have bought the house. If I was not disabled I would not need this work done. If I was not disabled I would have been able to move straight in. But, because I am disabled, and because I need an accessible home, the consequence is that for a few months, I have to pay a great deal more council tax that I would have otherwise. To me, this feels like a disability tax, a financial penalty for having access needs, a punishment for being a wheelchair user.
After I was granted the 50% discount, in an effort to challenge SBC in regards to the levy I contacted my local Councillor, my MP and my MSP. Everyone is in agreement that while the legislation has its place, applying this levy to me is unfair and completely lacking in common sense. Someone in my situation, who is renovating a property to make it accessible should not be financially penalised in this way.
Support from my Councillor, MP and MSP.
“It is supposed to help stop the empty homes crisis but in reality its people like you that are getting unfairly penalised. I get why they are trying to do this but in some cases (like yours) common sense need to be added. Its not your fault that someone else left the property empty for years, therefore you should not be penalised unfairly.”
“You are correct in stating that the point of the council tax levy is stop houses lying empty, but that is not what you are doing.”
“This situation is awful, and I have absolute agreement with you that someone in your situation should not be required to pay council tax on a property that you are renovating to equip it for your needs.”
“You have your MP, your MSP and the Council Leader on side.”
Despite their support though, unfortunately everyone’s hands are tied.
“I am so sorry… legally the councils hands are tied. We have looked at your case and tried to find as many discounts as we can possibly find to apply to you bill. I realise that this is not good news and if we could do more we absolutely would.”
Legally, the Council cannot apply any more discounts or reductions to my council tax (so they say), so I have no choice but to pay, which I have done, grudgingly.
My Councillor however is in complete agreement with me that this legislation must be challenged. She believes that my case should be highlighted to the Scottish Government and she agrees with me that the law should change. So I have given permission for the details of my case to be forwarded to the Scottish Minister who has responsibility in this area. I’m not sure what will happen next, I’m considering a petition, and I’m not against going to the press. If we are successful, and we get this law amended, I will attempt to be refunded for the amount of council tax that I will have paid during this period.
As well as financially hurting me, this situation has caused me a great deal of emotional stress and anxiety. I have found dealing with SBC to be incredibly unpleasant. The flippant nature of some of their communication has been upsetting, not to mention the amount contradictory and incorrect information they have given me. They have left me with zero confidence that they know what they’re doing, or that they care about the well being of their citizens/constituents (or whatever we are). I am dreading having to deal with them again when it’s time to apply for the Council Tax reductions when I move in.
SBC have also forced me to give up some of the accessible features of my new home. I hadn’t bargained on having to pay Council Tax during this period, but now that I have to, I’ve had to use money that I had saved up and earmarked for other things, such as an accessible walk-in bath.
Local authorities have a responsibility to protect their vulnerable citizens, and as a disabled adult, as much as I dislike this, I am considered to be ‘vulnerable’. The Adult Support and Protection (Scotland) Act 2007 places a duty on the Council to protect vulnerable adults from harm. Harm can include: physical harm, psychological harm, financial harm, sexual harm and neglect. I don’t believe that SBC have protected me from harm. I actually feel that the harm I have been subjected to, both financial and psychological, has been caused by SBC. But also, because stress causes my physical ME symptoms to worsen, and this situation has certainly been extremely stressful, I could argue that I have been subjected to physical harm as well. I’m still trying to figure out exactly how I feel about this, and how I plan to proceed, if I have the energy to make an official complaint, or to take it to the Local Government and Social Care Ombudsman. Or it might be enough for me to know that this blog post is out there for the world to read.
In regards to my campaign to have the law amended, I will provide updates as and when they happen, if they happen. Rather than publish a new post with each update though, I think I’ll add updates at the end of this post, so keep an eye out if you would like to know what’s going on. I will also mention any updates on this matter in future unrelated posts, with a link that will take you back here.
Wish me luck!
UPDATE: 22nd September 2019
Both my MP and Councillor (who is also the Council Leader) wrote to the Scottish Government Housing Minister, Kevin Stewart MSP and brought up the issues I have in regards to this legislation.
These are the changes I want them to make…
I believe that a clause needs to be added to the legislation that allows local authorities to be flexible when implementing the levy on people. They should consider each case on an individual basis, and in some cases, like mine, they should apply common sense and not apply the levy.
I also believe that the ‘empty property’ clock should be reset when the property changes ownership. It astounds me that no one seemed to consider this, or if they did, they saw fit to discount it. I wouldn’t have to take responsibility if the previous owner failed to pay a phone bill, for example, so why am I being held responsible for the previous owner leaving their home unoccupied? It makes no sense whatsoever, and I’m amazed that these issues weren’t flagged up at SBC when they first implemented the legislation.
SBC are adamant that they are simply following the law, that they do not have the power to be flexible, they are placing the ‘blame’ entirely on the Scottish Government, but the reply that my MP received from Mr Stewart tells a different story…
“Your letter expresses concern about the application of the empty homes levy Scottish Borders Council and a lack of flexibility afforded by the legislation. The levy was introduced with the intention it would act as an incentive to encourage private sector home owners to bring the property back into use, rather than simply a revenue raising tool. I can advise that The Council Tax (Variation Unoccupied Dwellings) (Scotland) Regulations 2013 provides local authorities with the power to apply a surcharge on long-term empty homes and determine the circumstances in which the increase applies. It allows them, should they choose to do so, to take the individual circumstances of owners into account when applying the increase. We updated and refreshed our guidance to clarify this flexibility and this was circulated to all local authorities in April 2018. These powers are discretionary and rightly lie with councils, however, I have been encouraging those with blanket policies to look at their peers who have chosen to adopt a more flexible approach.”
So, while SBC and the Council Leader are telling me that SBC have no flexibility in applying the levy, the Housing Minister is denying this. He actually states outright in his letter that local authorities do have discretionary powers and they are allowed to take individual circumstances into account. He appears to be placing the ‘blame’ back onto SBC.
Mr Stewart also stated in his letter that normally, the power to make these decisions would lie with a dedicated Empty Homes Officer, which SBC do not have. My MP has raised this issue with the Council Leader to ask if SBC have any plans to hire somebody to fill this role.
I wonder, if SBC had filled this role, maybe that is the person who would have had the power to deal with these cases on a discretionary basis. Maybe that is the person who could have applied common sense to my case, and not financially penalise me (for the previous owner leaving their property unoccupied).
SBC raised £611,881 in 2017 thanks to this legislation, so you’d think they could afford to employ someone to fill this role.
In lieu of an Empty Homes Officer at SBC Mr Stewart recommended that I contact the Scottish Empty Homes Advice Service, he said they could perhaps liaise with SBC to try to come to an agreement about the level of Council Tax due.
Mr Stewart ended his letter with this…
“I note your comments about resetting the clock when empty homes are taken on by new owners. This is something I will consider as part of our review.”
For some reason I’m not feeling particularly hopeful that he will follow through on this.
Unfortunately my MP cannot do anymore to help me because this specific issue is devolved to the Scottish Parliament. However, he has been in contact with Michelle Ballantyne MSP (my MSP – I thought Christine Grahame was my MSP but apparently I have more than one?!?) and someone from her office will be in contact with me to discuss how she can perhaps move my case forward. She will be able to ask questions within the Scottish Parliament directly to the Housing Minister, which is something that my MP cannot do.
So, that’s where I’m at. My MP and Councillor have hit dead ends, but with the information from the Housing Minister’s letter, I really hope my MSP can move this forward. I’ll be back with another update as and/or when there’s anything new to report.
UPDATE: 4th February 2020
An update to tell you that I have no update. I was in contact with staff from Michelle Ballantyne’s and Christine Grahame’s office for a while, but communication has now dried up. So, that’s that, I guess. None of the people who have the power to intervene and challenge seem to be willing to do so.
ME Science and Research
Health Rising. Dr. Klimas’s Big Win and What it Means for Chronic Fatigue Syndrome (ME/CFS).
It’s been a good few months since my last post, and you’ll soon find out why, I’ve had a lot going on. With so much happening, my limited brain function has had to be directed elsewhere, and my poor wee blog has been neglected as a result. I then found that the longer I spent away from my blog, the less motivated I felt to get back into it. However, I have recently been following a discussion in one of my ME support groups, it got me thinking, and it inspired me to write this post.
The discussion was about what information/advice we should share with people who are newly diagnosed with ME, which I have shared this at the end of the post. I was especially interested in what we should tell them about the likelihood of recovery.
Once people with ME reach the five year mark, recovery is unfortunately, statistically unlikely. Should we warn those who are newly diagnosed about this? Or is that too harsh for them to hear at this stage? Should we never tell anyone that recovery is unlikely? Is keeping hope alive more important than facing the truth? Does belief affect neurology? By telling someone newly diagnosed that they may never recover, are we setting them on a course of certain non-recovery? Or, is it possible to face reality, accept that recovery may not happen, but still retain hope that it could?
This is where I stand. I think people need all of the available information, however upsetting. I think living in false hope is exhausting, cruel, and ultimately incredibly damaging. I think acceptance is key. I think we need to tell people who are newly diagnosed the truth, that recovery may never happen, that they may have ME for the rest of their lives, and they should prepare themselves for that, but, some people do recover, it is possible, so accept your reality, but also don’t lose all hope.
When I was newly diagnosed I was told by many doctors that I would recover. One NHS GP said I would recover within four years, and a private doctor even told me that I would recover within one year.
I didn’t know much about ME back then, I was naive and I believed them. I was quite sure that taking time off work and temporarily moving from Edinburgh back to my hometown Peebles (to be nearer my mum) would help me recover.
When I moved back to Peebles I decided to rent out my flat in Edinburgh. This covered my mortgage and meant that when I was well enough I’d be able to give my tenants their notice and move back and get on with my life. I was so sure that this is what would happen that I was actually really worried about what I’d do if I recovered within six months of moving back home. My tenants lease was fixed for a minimum of six months, meaning that if I wanted to move back into my flat within six months of moving out, I wouldn’t be able to. I was genuinely concerned about this, it was a huge source of worry for me at the time.
Well I needn’t have worried, as time went on I realised that those doctors were wrong. The more I learned about ME, and as my ME progressed, the more I began to understand my reality. Most people with ME who do recover do so within two years, and once you hit the five year mark, recovery becomes statistically less likely. I am now in my sixth year of ME, and so far my ME has been on a path of gradual deterioration. It seems that positive thinking and genuine belief of recovery has little effect on an actual recovery.
I wish I had been told the truth when I was diagnosed. I don’t think the doctors told me an outright lie, I think they just didn’t know, so they made an uneducated guess.
My goal is to reach a state of acceptance. Of course I want to recover, that is my biggest wish, but I cope best by facing reality. How can I reach a state of acceptance if I’m not in possession of all the facts? Knowing what my reality is, however grim, is so much easier for me to bear than living in false hope.
What I am doing now is trying to build a life for myself as I am now. For the first time since having ME I am planning for a future that includes severe ME, and I feel so much calmer now than when I was living only in hope of recovery.
When my focus was solely on hoping and waiting for recovery, my mental health suffered. Because with that hope came the constant fear that I might not recover. With that fear came a near constant feeling of nervous dread and anxiety, and a very strong desire to no longer be alive. Without acceptance, I put more time into planning my death than I did my life.
Now, my focus is on living my life with what I have, severe ME. It won’t be anything like a non-ME life, it’s not what I would have chosen, but it’s the life I have, and I want to make it as good a life as possible. Accepting my reality is the healthiest thing I can do.
To achieve this goal I recently made a huge decision, well, two huge decisions. I had to let go of my pre-ME life. I had to let go of my flat in Edinburgh. In January this year I gave my tenants their notice, and in April I put my flat on the market. It sold within three weeks of being on the market, and the new owner has now taken possession of the flat.
Now, this next thing happened very quickly. There had been a house on the market in Peebles that seemed perfect for me, but I couldn’t do anything about it until I sold my flat. So the day that I accepted the offer on my flat my mum contacted the estate agent responsible for selling the Peebles house and expressed my interest in viewing it. We found out then that a closing date had been set for four days time. In those few days I viewed it, I liked it, I panicked, I doubted, I decided it was perfect and I made an offer. My offer was accepted. Within the space of one week, I both sold a flat and bought a house!
The house is in Peebles, just outside of the town centre, but as close to the town centre as possible while meeting the rest of my requirements. It is fully detached. This has been my ultimate dream. A house with no neighbours on the other side of the wall. It’s also a bungalow, which is so much more suitable for me. I thought a detached bungalow, my dream house, would remain a dream. I never expected to find one, and in such a good location.
It will be a couple of months at least before I move in as it needs some work to make it accessible for me – widening of external door frames to allow wheelchair access, ramps to the front and back doors, knocking down a wall to make the kitchen bigger, new and accessible bathroom, etc.
This house I hope will allow for an easier, calmer and hopefully a happier life. I won’t have the various obstacles that I do in my current home, and I’m really looking forward to living there. I never thought I’d experience that again, feeling excited for the future. I can’t promise that I’ll never feel stressed again, or have periods of feeling low or anxious, but with everything combined, this house should be as close to what I need to live with ME in as much comfort as is possible.
If I hadn’t recognised and accepted the likelihood that I may never make a full recovery, this wouldn’t be happening. I wouldn’t have been able to let go of my flat, and without the money from the sale of my flat, I wouldn’t have been able to buy this house. I would likely remain living in my current temporary accommodation, and hanging onto a state of mind that left me in constant limbo and anxiety. Nobody can thrive in that mental state.
The best chance I have of regaining some health and some function, if I ever do, is to accept my reality and plan accordingly. If I do make some improvement, then that will be a very happy and welcome surprise. Denial, false hope and superficial positivity though, while they may help some people, they don’t do me any good at all.
Advice to share with people who are newly diagnosed with ME.
This was written by a member of the support group who has had ME for 25-ish years. He prompted the conversation and after some discussion and a few changes this is what we came up with. I think it’s good and practical advice. Not too gloomy, but also not steeped in false hope. This is the advice I wish I had received when I was first diagnosed.
The main tip for someone newly diagnosed is that most people who recover do so within the first two years, and if you haven’t recovered in 5 years, then you are unlikely to ever recover*. The moral is: do whatever you need to do in the early years to maximise your chances of recovery. In particular, put money and ambition aside. That can wait, because if it doesn’t, you may never be able to do it again. Most people with long term ME pushed themselves in the early years. There is no way that you can do that AND recover. Take having ME very very seriously. The rest of your life depends on it. Pace yourself. Never over do it. Avoid stress like the plague.
If you haven’t recovered within 5 years, you don’t have to give up hope of recovery (it’s not impossible) but you do have to learn to live with it. That’s a different battle. Avoid stress, but remember that life is for living, so overdo it if you must, but do so with a plan. Take control of the illness by deciding when you are going to be active and when you are going to be inactive. Have a predictable weekly – even monthly – routine. Expect to be better in the summer and worse in the winter (or vice versa) and plan accordingly. Try and keep an emergency reserve for the unexpected. Have a contingency plan for when your bad days – when you can’t do anything – last longer than you expect them to. Have a contingency plan for when your best days – when you can do things with minimal cost – last longer than you expect them to. Do you take the opportunity to do even more? Or do you try to build on your success in the hope of some long term improvement?
Over the long term you will have not just bad days and better days, bad weeks and better weeks, bad months and better months, but bad years and better years. Strive to listen to your body and the rules that you have set for yourself. Contact support groups and share. You aren’t alone.
*The statistics for the low recovery rates in long-term ME were shared by ME Research UK during a presentation at the Scottish Parliament, at which he (the member of the support group who began this discussion) was present.
While searching for confirmation of these statistics we found the following…
*These statistics also appear in this report published in 2002 by the Working Group on CFS/ME, a group established by the Chief Medical Officer in 1998.
“Overall, there is wide variation in the duration of illness, with some people recovering in less than two years, while others remain ill after several decades.Those who have been affected for several years seem less likely to recover; full recovery after symptoms persist more than five years is rare.”
*The same statistics were shared by The ME Association in an open letter in 2015 to ITV’s ‘This Morning’, in regards to a segment on ME.
“Sadly, the prognosis for many adults with ME/CFS, especially when they have been ill for several years and not made any significant progress even with good management is poor and, as the Chief Medical Officer’s Report on ME/CFS noted in the section on Prognosis: ‘Full recovery after symptoms persist for more than five years is rare’.”
Stanford Medicine. Biomarker for chronic fatigue syndrome identified. Stanford scientists devised a blood-based test that accurately identified people with chronic fatigue syndrome, a new study reports.
The Guardian. Rod Liddle vilifies disabled people. I’m tired of the hate. We all should be. Whether it’s ME patients or another target, huge swathes of the media have normalised hatred of minorities for years.