Post Seventeen. The PACE Trial Scandal.

I have been wanting to write about The PACE Trial for some time, about the background, the controversy and where we are at today. I have tried, but unlike my usual posts it is very technical, involves a lot of research and there’s a lot to cover. I just don’t have it in me, with my brain fog and inability to really concentrate, it’s just too much. Luckily, this morning, a UK newspaper published a really informative and accurate article on the very subject, basically, the journalist in question, Jerome Burne, has done my job for me.

This article was in the most surprising place, The Daily Mail Online. Not only did The Daily Mail publish a good article about ME, but they referred to the illness as Myalgic Encephalomyelitis (ME), this is actually quite ground breaking stuff. Most mainstream articles refer to it as Chronic Fatigue Syndrome (CFS), which isn’t officially inaccurate per se, but CFS is, on the whole, very misleading. For the uninformed, it implies that this illness is simply ‘fatigue’, it perpetuates the myth that we are ‘just tired’. I can’t think of any other major illnesses that are named after only one of their symptoms. A symptom of Multiple Sclerosis is fatigue, but it isn’t called Chronic Fatigue Syndrome. A symptom of Lung Cancer is coughing, but it isn’t called Chronic Coughing Syndrome. A symptom of Alzheimer’s Disease is memory loss, but it isn’t called Chronic Forgetfulness Syndrome. I think you get my point.

What’s worse than CFS, is when it is referred to as ‘Yuppie Flu’. This stems from a ME outbreak in the 1980’s, when it was seemingly mainly young professionals who became unwell with ME, and the term ‘Yuppie Flu’ was born. It is derisive, outdated and offensive, yet it is still frequently used in the reporting of ME. A recent article in The Telegraph actually used ‘Yuppie Flu’ in their headline. Thankfully they changed it shortly after publication, realising how offensive it was (after a lot of complaints from the ME community). You might think that these things shouldn’t be that important, that we are using our limited energy on the wrong battles. That we (people with ME) should be grateful for any scrap of exposure thrown our way. No. These things matter. Language matters. The words we speak have meaning, and impact. When reporting, in the science section of a national newspaper, on a serious health matter, the language used should not reduce the health matter in question to a joke.

The PACE Trial (short for “Pacing, graded Activity, and Cognitive behaviour therapy; a randomised Evaluation) is, essentially, a medical scandal, not dissimilar to the Andrew Wakefield MMR vaccine controversy. The PACE Trial has impacted on every single person with ME in the UK, and beyond. It is the basis on which the NHS ‘treat’ ME, and due to the influence of the trial’s authors, it impacts heavily on the funding of ME research, which in the UK, is poured into psychiatry, rather than much needed biomedical research. Misconceptions were already there, but The PACE Trial, and the psychiatrists connected to it have actively encouraged the media, the government, medical professionals and the general public to believe that ME is a psychological illness. That it is ‘all in our heads’, that we don’t have an intolerance to exertion but ‘false illness beliefs’, that we have somehow, collectively, all 17 million of us, falsely convinced ourselves that exertion is harmful. In fact anyone with ME could tell you exactly how exertion, both mental, emotional and physical impacts on our bodies. I really don’t understand how it could be ‘false illness beliefs’ that cause my shoulder joints and muscles in my arms to hurt, to the point of tears, after a twenty minute (hands free) phone call. The damage that The PACE Trial has done/is doing to us is immeasurable. The trial has been widely debunked, but until it is officially retracted, the damage will be ongoing, in actual fact, the damage will probably live even after it is retracted.

Anyway, back to the article by Jerome Burne. He did such a good job, and I’m incredibly grateful to him. It’s one of the best articles on this subject that I have read. I have copied the article below, with a link to the original article (just click on the headline to take you to The Daily Mail website). Throughout the article I have added some additional information, and some of my own thoughts, you’ll find these in brackets in blue text.

Why are doctors and patients still at war over M.E.? How the best treatment for the debilitating condition is one of the most bitterly contested areas in medicine

By Jerome Burne for The Daily Mail. 15 August 2017.

Myalgic encephalomyelitis (ME) is a debilitating condition that can leave those affected bedridden for years. It’s linked with as many as 60 symptoms, the most common being a feeling of constant exhaustion — ‘like a dead battery’. (Yes this is a common symptom, but not the defining symptom. The defining symptom is post exertional malaise, an intolerance to exertion, which causes symptoms to flare after the activity. ‘Dead battery’ however is a good description of the exhaustion. The exhaustion is less ‘feeling tired’, but more a severe lack of energy, or severe weakness. I have experienced tiredness previous to having ME, I’ve had insomnia and sleepless nights for years. But it never caused me to be unable to lift my phone, my head, my toothbrush…)

The condition first reached mainstream consciousness in the Eighties following outbreaks in New York and Nevada. By then it was officially known as chronic fatigue syndrome (CFS).

For a time, it seemed everyone knew someone who was affected by it, and it was derisively dubbed ‘yuppie flu’ because it seemed typically to affect young professionals.

For years there’s been a long-running and bitter debate between doctors and patients about its cause and how to treat it.

The lack of a clear physical cause meant many doctors dismissed it as all in the mind. This infuriated patient groups who insisted it was all too real and the result of an infection or immune system failure.

Even now, when it is generally accepted that ME/CFS is a genuine condition, it remains one of the most angrily contested areas of medicine. But the battle lines are no longer drawn just between patients and doctors: the medical community itself is at loggerheads.

The issue: the best way to treat ME. This has huge significance for the estimated 500,000 people in Britain affected by it. The official NHS treatment for their condition is delivered by psychologists and involves a combination of cognitive behavioural therapy (CBT) and graded exercise therapy (GET) which involves doing a little more each day. (Interesting to see the estimated figure as 500,000 rather than the usual 250,000. I learned recently that the ‘250,000’ figure was actually estimated around 30yrs ago, so of course this number has grown.) (As well as providing little benefit, GET is actually harmful and dangerous. This ‘treatment’ has caused many people with ME to experience a severe and often permanent worsening of their symptoms, and has, in some cases, lead to death.)

The idea is that doing regular aerobic exercise would help patients a lot, but that they are held back by ‘fear’ of activity: the CBT is meant to overcome this. (Using CBT to alleviate our alleged ‘fear’ of activity is of course nonsense. I did however find CBT useful in terms of helping me to cope with this huge life-altering diagnosis.)

Many patients and doctors claimed this combination provided little if any benefit.
This dispute has now broken out into the public arena in an extraordinary fashion. Two weeks ago the Journal of Health Psychology published what was effectively an attack on the official NHS treatment. (You can find the journal online here ‘Journal of Health Psychology, Volume 22, Issue 9, August 2017. Special Issue: The PACE Trial‘)

Three editors resigned from the journal in protest at this stance. In a leaked email, one of the resigners was described as a ‘disgusting old fat neo-liberal hypocrite’ and an ‘ol’ sleazebag’ by an editor who supported the journal’s approach.

But the insults swing the other way, too — recently, a scientist described patients critical of the CBT approach as ‘borderline psychopaths’ and likened them to animal rights activists. (Remember, these are professional scientists who are referring to the very people they claim to be ‘working for’ as ‘borderline psychopaths’, simply for questioning their claims.)

The row is about a trial published in The Lancet in 2011 that helped form the official guidelines on treating the condition. This was a large trial, called PACE, involving 641 patients, costing £5 million. It was paid for by the Government and carried out by psychologists at Queen Mary University in London. (Interestingly the trial was also part funded by the The Department for Work and Pensions (DWP), the only clinical trial they have ever funded, I believe. Could it be that The PACE Trial was less ‘science’ but more a cost cutting exercise for the government? With the aim of reducing benefit and insurance claims? It is in fact not at all uncommon for the DWP to turn down disability benefit applications from people with ME who refuse CBT and GET…)

PACE found that patients being treated with the combination treatment — 14 sessions with a therapist over a six-month period — improved by 60 per cent, while the ‘recovery rate’ (which implied a ‘cure’) was 20 per cent. (It is worth noting here that the researchers changed, throughout the trial, what constituted as ‘improved’ and ‘recovered’, because they weren’t getting the results they wanted. Participants could end the trial being more unwell than when they started, yet they were still categorised as ‘recovered’. Also, they used the Oxford Criteria for diagnosis of the participants, as opposed to the Canadian Consensus Criteria. The Oxford Criteria is widely considered to be overly broad. It does not include the defining symptom of ME, post exertional malaise, rather, it lists ‘fatigue’ as the main symptom. So, did the participants actually have ME to begin with?)

“For every 15 patients selected under Oxford criteria, 14 will be false positives when compared to Canadian Consensus Criteria” me-pedia.org

(There is now an even more up to date clinical criteria for ME. The ME International Consensus Criteria, published in the Journal of Internal Medicine in 2011. This is an update of the Canadian Consensus Criteria, which was published in 2003. You can read more about The ME International Consensus Criteria in my blog post, Post Seven. Symptoms)

But a new analysis of the data has suggested that patients experience just a 20 per cent improvement, and only 5 per cent are classed as recovered. (Would a pharmaceutical drug with such low odds for improvement or recovery be approved as an NHS treatment?)

‘This has cast serious doubts on the recovery rates being claimed,’ adds Dr Charles Shepherd, honorary medical adviser to the charity the ME Association (Dr Shepherd was also a member of the Chief Medical Officer’s Working Group on ME/CFS and the Medical Research Council’s Expert Group on ME/CFS research).

‘The trust of patients has been lost. PACE needs to be withdrawn.’

In fact, patient campaigners have been claiming for years that the psychological approach is profoundly wrong because it implies the problem is the way the patient thinks about it. They consider that they’re suffering from a physical disorder.

The re-analysis of the PACE data has set the cat among the pigeons. A challenge to evidence supporting a NICE-approved treatment is unusual, not least because the data was only made available after a protracted battle by patients.

Ever since its publication in The Lancet, the PACE trial had been questioned by patient groups. They wanted to see all the data the trial had gathered to check the statistics.

For five years patient advocates and some doctors sent letters and Freedom of Information requests to the researchers — Professor Peter White (of Queen Mary University of London), Professor Michael Sharpe (Oxford University) and Professor Trudie Chalder (King’s College London) — without success.

Grounds for refusal included risk of revealing patient identities and claiming the demands to hand over the data were vexatious or a form of harassment.

Indeed, one expert witness for the researchers drew parallels between these ME/CFS ‘activists’ and animal rights groups, suggesting there was a serious risk of violence to researchers if the data was released. But then the Information Commissioner’s Office became involved and the university was ordered to cough up the data. It refused and then spent more than £200,000 to have the order dismissed.

This was rejected by a tribunal (as for the claim of threats being made, under cross-questioning the expert witness admitted there hadn’t been any). (The witness lied about the ME community threatening them. There have been no threats.)

When the trial data was finally re-analysed and checked by two independent academics, Philip Stark, a professor of statistics at the University of California, Berkeley and Professor Bruce Levine from the Department of Biostatistics at Columbia University, it ‘revealed that the study contained little evidence that CBT and graded exercise add anything to standard medical care in terms of patient recovery’, according to Professor Levin.

This was backed by Jonathan Edwards, an emeritus professor of connective tissue medicine at University College London.

‘The results of the re-analysis shows that the call for access to the PACE data for independent analysis was justified,’ he said. ‘It confirms that this study failed to provide reliable evidence for useful, sustained benefit from either CBT or graded exercise therapy.’

Sir Simon Wessely, Regius professor of psychiatry at King’s College London, has long been identified with the psychological approach. When he was asked about the data re-analysis last year, he was quoted as saying: ‘OK folks, nothing to see here, move along please.’ (He is unable, or unwilling, to back up his data, or to provide any evidence.)

He added that patients did improve and that the treatments were moderately effective. (Again, he has nothing to back up his claims.)

ARTHRITIS DRUGS MIGHT HELP

The Journal of Health Psychology gave the original researchers the right to respond to the criticisms — they said they stood firmly by their findings, and that ‘the PACE trial… along with other studies provide patients, healthcare professionals and commissioners with the best evidence that both CBT and GET are safe and effective treatments’.

But what about the ‘biological’ theories of ME/CFS and the new research published recently suggesting a link with raised levels of molecules linked to inflammation?
Commenting, Dr Alan Carson, reader in neuropsychiatry at the University of Edinburgh, said what wasn’t clear is whether a higher level of these molecules ‘necessarily make you feel worse’.

He added: ‘It’s highly unlikely it will lead to a blood test any time soon.’

Yet Professor Edwards, who has described the PACE trial as ‘poorly designed, poorly executed and inappropriately interpreted’ believes that studies are needed.

‘Here in the UK we’ve spent far too much on the psychological aspect,’ he says.

‘Understanding the biology is what’s going to lead to an effective treatment.’

Professor Edwards, a rheumatologist, has previously found that patients with ME/CFS as well as rheumatoid arthritis reported great improvement when they were treated with the powerful anti-inflammatory drugs used for their arthritis. A trial of this is now under way. (This drug is called Rituximab. It is used to treat some autoimmune diseases and some types of cancer)

Meanwhile, PACE continues to have support among psychiatrists and psychologists. It seems unlikely that it will be withdrawn, and so the struggle between the doctors and patients continues.

UPDATE: COULD IT BE CAUSED BY INFLAMMATION?

At the heart of the issue is what causes ME. Patient activists and some doctors consider it a physical disorder.

This ‘biological’ theory appeared to be reinforced by recent research from Stanford University in the U.S. that identified a new set of ‘messenger’ molecules in the blood that are part of the immune system and behave differently in ME/CFS patients. (You can read about it here ‘Researchers identify biomarkers associated with chronic fatigue syndrome severity, Stanford Medicine News Center‘)

New, sophisticated equipment allowed a team to run a very detailed analysis of the blood of 192 patients, comparing it with nearly 400 healthy people. They found that immune system messenger molecules (cytokines) that trigger inflammation and produce flu-like symptoms were higher in patients with the most severe symptoms.

An independent expert, Gordon Broderick, a systems biologist at Rochester General Hospital in New York, commented that it was a ‘tremendous step forward’.

~~~

Again, I’d like to thank Jerome Burne for writing this article. It means a great deal, and it brings me hope when ME is reported in the mainstream media in such a fair, balanced, accurate, informative and sympathetic manner. More articles like this will help to change the general perception of ME and hopefully result in this debilitating illness to be taken more seriously.

 

Further Reading:

PACE Trial, MEpedia

The Making of the PACE Scandal, Centre For Welfare Reform

The PACE Trial: The Making of a Medical Scandal, The ME Association

‘No confidence’: Charities reject NICE ‘no update’ proposal for ME/CFS guideline, VADA Magazine

Getting It Wrong On Chronic Fatigue Syndrome, The New York Times

Bad science misled millions with chronic fatigue syndrome. Here’s how we fought back, STAT News

How a study about Chronic Fatigue Syndrome was doctored, adding to pain and stigma, The Conversation

James Coyne “lays waste” to PACE trial in Edinburgh, Phoenix Rising

 

 

 

 

Post Sixteen Continued… Wheelchair Or Not. An Afterword.

After my last post I realised something, albeit with the help from my counsellor. It’s not what other people might think about me as an occasional wheelchair user that is holding me back, it’s what I think of myself.

This life was not meant to happen to me. I’m meant to be living in my beautiful flat in Leith, Edinburgh, with views of Edinburgh Castle to one side and Fife to the other. I’m meant to be working, advancing my career at Cyrenians, or maybe I would have moved on to another charity. I was meant to go to Antarctica. The wildest and most unlikely of dreams I ever had came true, I worked hard and I made it come true. I was chosen, trusted and selected as one of the four staff to work and live at Port Lockroy, the ‘Penguin Post Office’, for four months. My main role was going to be within the shop, I was going to be responsible for the finances, inventories and stock management. I would also be assisting with running the Post Office, non-merchandise stock control and liaison with the cruise ships. After I’d returned from Antarctica I was planning on, at some point, a short-term move to Reykjavik in Iceland, I was going to enrol in the University’s summer language course, (try to) learn Icelandic and then maybe stay longer, or not (that would be dependant on the successful, or not, learning of the Icelandic language). I’m meant to be travelling and exploring the world. I was not meant to get ill, lose everything I had worked for, move back to my hometown, be reliant on benefits and get a wheelchair. This is never how I imagined my life would turn out. I’m ashamed that I think this, but I already view myself as having failed. Failed at what? I don’t know, life I guess. Becoming a wheelchair user is just one more step in the ‘wrong’ direction. In reality, I know it will be good for me. But in my head, it’s not right. The funny thing is, I would never think this about anyone else. Having a chronic illness and/or a disability does not equal ‘weak’, I would never suggest that anyone else who uses a wheelchair, or any other mobility aid is a failure, never. I would be appalled if I heard anyone else say such things about another person. So why am I so harsh on myself? I often say that I worry that other people feel this way about me. But the truth is, this has never come from anyone else, it’s all me. It’s how I view myself. A big part of me hates the invisibility of my illness. I know it comes from a kind place, but it’s upsetting when people tell me ‘I look well’, when they know I’m not. But for the people who don’t know me, the many strangers, when they see me walking in town, I could be a successful person for all they know, with a career, a social life and a body that works. As soon as they see me in a wheelchair, well then they’ll see me for what I really am, and that is not someone who is living their best life. Maybe I like the invisibility of my illness more than I admit to. Saying this, I’m actually not so conceited that I think anyone pays any attention to me at all, wheelchair or not, chronic illness or not. I’m projecting what I think about myself onto others, because it’s easier to deal with what other people, strangers, ‘may’ think of me, rather than what I think of myself. That, is what I need to deal with. I need to somehow get out of my head and come to terms with the life I have, and be happy with, or at the very least, accept the life that I have.

 

 

Post Sixteen. Wheelchair Or Not?

I’m currently trying to decide whether or not to buy an electric wheelchair. It is however, an expensive purchase, in the thousands, so if I do, I have to be sure. The problem is, I’m not sure.

If I go for it I will first have to get over some significant emotional barriers about what this means for me. Does it mean I am ‘giving in’ to my illness? If it does, is that bad? There’s little point in pretending that I don’t have ME, that I’m not severely incapacitated by it. Will I become too dependant on it and risk deconditioning? I don’t think so. I can walk short distances and I don’t plan on using the wheelchair to get somewhere I can manage by foot, I like to use my legs when I can. So I’ll still be walking the same short, and infrequent distances as I currently do, and I had it confirmed at a recent hospital appointment that my muscles have not (yet anyway) deconditioned. Will I feel self-conscious and embarrassed to use it in public? Probably. I already feel self-conscious and embarrassed to use my walking stick. Will people treat me differently when they see me as a wheelchair user? Possibly. This article in The Pool suggests that 25 per cent of Brits find it “uncomfortable” talking to disabled people. Apparently some people feel they have nothing in common with disabled people. Will the people who once felt they had things in common with me no longer feel that way? Has my personality now reduced down to nothing but ‘chronically ill person’? To be honest I think some people already do feel that. They can’t see that despite this life-changing illness I am still the same person, with the same interests, the same morals, the same passions, the same dreams and the same goals, it’s just that my body no longer works as well as it used to. Something I struggle with is that my illness is ‘invisible’. Generally speaking I look ‘well’. There’s no way that someone who didn’t already know could look at me and know that I have a severe debilitating chronic illness/disability. So a wheelchair would solve that problem, wouldn’t it?

There are many situations that I currently avoid. On a better day I can manage the walk to the post office and back, although not without PEM (post exertional malaise). But this is based on not having to stand in a queue, and I can’t possibly know ahead of time if there is a queue or not, so I don’t risk it. A wheelchair would change this. There are also many activities that I simply cannot do, that are far too much for me, that I don’t have the energy for and that my legs wouldn’t manage. Like walking to my mum’s house, or having a wander along the High Street to visit my favourite coffee shop that is just that bit too far for me to walk (I’m talking about you Coltman’s). When I go out I might be able to stay out for longer while maintaining my energy levels. On better days I could do these things with a wheelchair. Note that this would still have be on a better day, I might have wheels but I’d still have ME, I’d still have daily widespread pain, debilitating exhaustion, dizziness, brain fog and sensory overload. Having an electric wheelchair won’t undo any of my symptoms, it will simply give me access to a higher level of mobility than I currently have. So far, I’ve begrudgingly accepted my current limitations, the fact that I’m mainly housebound, that many activities that used to be so everyday and normal for me are now off limits, I don’t like it, but it is what it is. But maybe it doesn’t have to be? With a wheelchair maybe I could regain some of my lost independence and freedom, maybe it would open my world up. If I can get past my fears and insecurities it could be wonderfully empowering.

I do however have concerns, some rational, and some possibly less so. I’m concerned about how much I will use it, will it be worth it? Like I said, the arrival of a wheelchair is not going to suddenly improve my health enough that I can start going out every day, or even every other day. What if I only get use out of it a couple of times a month, is that enough to justify the cost? I also have to think about the overall use of my already limited energy. If having a wheelchair will allow me to go out more frequently, will I actually end up using more energy on these outings, energy that I wouldn’t have used otherwise? Should I accept and stick to my limitations, remain mainly hosuebound in the hope that only prolonged rest and limited activity will allow me to recover? Maybe. But this existence has already damaged my mental health, so what will a few more years, decades, or a lifetime of this do to me?

One of my main concerns is based around the fact that I can walk short distances. I worry about what people may think, or say, when they see me get up from my wheelchair and walk. There’s a horrible meme that I’ve seen on Facebook a few times, (which unfortunately means that I have friends who have ‘liked’ or shared this meme). It’s a photo of a woman standing from her wheelchair to reach a high shelf in a supermarket. The caption reads “There’s been a miracle in the booze aisle!”, or something along those lines. It’s cruel, it’s ableist, and not in the least bit funny. I don’t want to become a meme. Some people seem to think that wheelchairs are only for those who cannot walk, at all, ever. I read The Mighty, an excellent website full of personal accounts written by people all over the world living with various illnesses and disabilities. I’d recommend it for anyone, it has aided my understanding of the vast world of illness and disability immeasurably, and couldn’t we all use a good dose of increased empathy. I come across a new post pretty much every day about people judging disabled people. Either they don’t look ‘disabled enough’ to use that parking space, despite having a Blue Badge (or the equivalent in their country), or they look ‘adequately disabled’ in their wheelchair, but then they rise from their wheelchair and their spectators think ‘my god it’s a miracle’, or more frequently, they think the person in the wheelchair is a fraud. This kind of thinking is common, far too common, I read these stories frequently. Many people judge and make assumptions, they lack the ability to consider any set of circumstance other than their own, they view disability in black and white, rather than the many shades of grey that make up the world of disability and chronic illness. I don’t want to be the person being judged for getting out of my wheelchair when I can, need or want to, and I don’t want to be the butt of anyone’s jokes, especially not when I’m already going to be feeling all sorts of self-conscious and vulnerable sitting in my wheelchair.

Of course, when I’m able to temporarily push my fears aside, when I’m thinking rationally, or when I think about how I would advise someone else, it’s a different picture altogether. I view a wheelchair like a pair of glasses. People who don’t have perfect sight wear glasses, or contacts, to aid their vision, and some people use wheelchairs to aid their mobility. It’s an aid, something to help and enhance a person’s quality of life. No one judges me for aiding my vision by wearing glasses when I use the computer or read, so maybe no one will judge me for aiding my mobility by using a wheelchair, and those who do view me differently, well, do I want them in my life? And I know I shouldn’t care what strangers think, but I do, sadly. When I’m able to think positively about this new world of mobility, I already know where I’ll go first. My favourite walk, in the valley behind my mum’s house, it’s so peaceful, the town is completely out of sight, and maybe this sounds cheesy, but it’s where I feel closest to my dad, we walked here together so many times. The wheelchair I have my eye on won’t manage the whole walk, I’d need an all-terrain, four wheel drive monster of a wheelchair to walk the full thing, but just a glimpse of the valley would be enough for me. The thought of being able to go out and not worry about how long my legs will hold me up, or whether my lightheadedness or dizziness will overwhelm me, well that thought brings me nothing but joy.

The wheelchair I’ve been eyeing up is lightweight and foldable, and of course it’s electric. I don’t have the strength in my arms to self-propel, I mean, I couldn’t even squeeze the juice out of a lemon the other day. And I don’t want to be reliant on someone pushing me, that defeats the purpose entirely. The reason I have to be absolutely certain about this is the cost, it’s incredibly expensive, around the £2,500 mark, possibly more depending on what accessories I buy, like a second battery etc. Before you ask, no, an electric wheelchair, for me, is not available on the NHS. If I want it, I have to buy it. There is however another option. Crowdfunding. It is not uncommon at all, actually it’s incredibly common, for people to crowdfund their electric wheelchair. I don’t know how I feel about this, actually I do, I feel really uncomfortable about this. I know it’s not exactly the same as a person asking for sponsorship to fund their amazing holiday to Peru so they can hike The Inca Trail to Machu Picchu, under the guise of ‘charity’, but the idea of it makes me squirm all the same. So I ask you, how would you, my friends, family and readers feel about me crowdfunding my electric wheelchair? Would it be really cheeky and/or presumptuous of me?

There’s another option, I could reapply for PIP (Personal Independence Payment), a benefit that helps with the extra costs of a long-term health condition or disability, it’s the one that is gradually replacing DLA (Disability Living Allowance). I did apply for this a couple of years ago, I attended the horrendous face-to-face assessment, the assessor lied in his report (for example, he claimed that I made my own way to the assessment centre, even though my mum drove me, which he knew, he gave her a form to claim back her petrol expenses) and the DWP turned me down. Despite the fact that more than half of PIP decisions are changed after mandatory reconsideration or an appeal to a tribunal, I didn’t fight it, I simply didn’t have the energy. I also felt that I could manage without PIP, I had my ESA (Employment Support Allowance) and the rental income from my flat (minus the letting agency fee, mortgage, insurance etc), so I wasn’t feeling hugely driven to challenge the result. Something really annoying though, I really could use a Blue Badge, which means when I go to the GP, or to the hospital, or anywhere that has designated disabled parking, my mum could park there. But, in the region in which I live (Scottish Borders), I can’t apply for a Blue Badge without first receiving PIP. So, to get a Blue Badge, I would need to reapply for a benefit that I don’t really need, then apply for the Blue Badge. It’s ridiculous. But actually, the more I think about it, I could use PIP. It would take time to save up, but it could pay for my wheelchair, it could pay for the expensive experimental treatments that I currently cannot afford, acupuncture for my chronic migraines, for example. It could pay for my counselling (currently paid for by a kind benefactor), it could pay for my supplements and my private prescription for Low Dose Naltrexone. The more I think about it, my illness/disability does incur many costs, having ME is expensive, and that is exactly what PIP is for. But do I have it in me to go through the traumatic (no exaggeration) application process again? I don’t know. My mental health is fragile, and the DWP are certainly capable of pushing me over the edge.

One of my biggest bugbears in life is unsolicited advice, people advising me when I haven’t asked for advice. But I am now asking for advice, your advice is very much solicited. What should I do? What would you do? Should I feel self-conscious? I know you’ll say I shouldn’t, I guess what I really mean is, can you understand why I will feel self-conscious? Can you empathise with me? Have you ever had judgemental thoughts about someone who can walk short distances using a wheelchair? Did you laugh at that internet meme? Do you think it means I’m giving in to my illness? Do you think it will hinder my recovery? How should I pay for it? Can I crowdfund this without people thinking “cheeky cow, pay for your own mobility aids!”? Should I put myself through the harrowing process of applying for PIP which will undoubtedly end up at a tribunal (most do)? Or, could it be one of the best possible things I could do for myself? I just don’t know. I really don’t.

Update: The day after I published this I had a moment of clarity regarding the fears that are holding me back. You can read about this here… Post Sixteen Continued… Wheelchair Or Not. An Afterword.

Post Fifteen. Employed To Unemployed.

This week has seen a huge change in my life, it’s been brewing since early December but on Wednesday 7th June it became official. It was my last day of employment with Cyrenians, an Edinburgh based charity.

For nearly 50 years, Cyrenians has served those on the edge, working with the homeless and vulnerable to transform their lives by beginning with their story, helping them believe that they can change their lives, and walking with them as they lead their own transformation.

Our Vision is an inclusive society in which we all have the opportunities to live valued and fulfilled lives. We work to make that vision a reality by our Mission to support people excluded from family, home, work or community on their life journey.

Our way of work is built on our four core values:

Compassion: We believe that everyone should have the chance to change, no matter how long that might take.
Respect: We believe in tolerance, acceptance, valuing diversity and treating each other as equals.
Integrity: We are committed to the highest quality of work, grounded in honesty, generosity, sincerity and professionalism.
Innovation: We are willing to take risks, challenge convention and be very creative in our search for new ways of working, in particular by taking account of the environmental impact of our decisions.

I’ve worked for Cyrenians since July 2012 in the Community and Food branch of the charity. We ran the FareShare Franchise for Central and South East Scotland. FareShare is a national UK charity who redistribute surplus food from producers and suppliers to not-for-profit organisations that work with vulnerable people, such as homeless hostels, soup kitchens, community groups and childrens breakfast clubs. We, with our army of volunteers, got the food to those who need it the most, while helping to avoid excessive food waste.

It was a privilege to work for Cyrenians, yes it could be stressful, yes it could be physically and emotionally challenging (I have cried in the walk-in freezer on more than one occasion), but taking a job there was one of the best decisions I’ve ever made. I have met some wonderful people. The volunteers I worked with, even though I haven’t seen them for over two years, they still inspire me. I mean, sometimes I struggled with the 7am starts. I’d walk to work in the dark on a rainy winter’s morning to arrive at the depot (that was usually colder inside than outside) to be met by smiling volunteers, ready to start their busy shift of putting the food orders together. All the volunteers, in all of their roles, with their dedication, willingness and hard work are really what made this job for me. Of course distributing seven tonnes of food per week and feeding thousands of people was good too, as was driving the forklift!

My forklift qualification wasn’t the only slightly bizarre but memorable aspect of this job. I once spent an afternoon stacking over 3000 haggis (haggi?) in our freezer. The tens of thousands of Snickers bars that we received because they were put in the wrong wrappers. I’ve seen ‘behind the scenes’ of many supermarkets and their distribution warehouses, yes I find this fascinating, really! I’ve got an Intermediate Food Hygiene (with credit!) qualification from The Royal Environmental Health Institute of Scotland that I wonder if I’ll ever have a use for again. I was once forced on stage by the Scottish singer/songwriter Dougie MacLean to give a speech about Cyrenians in front of a couple of hundred people. I’ve helped a poor delivery driver clean the back of his van when a yoghurt delivery went wrong and two pallets of yoghurts basically exploded in his van. Then there was the simple pleasure of working away at the computer to have a volunteer appear with a cup of tea that they’d made for me, I swear many of them could read my mind. There were a lot of sombre moments too of course, and I have many memories of a more saddening nature. But I feel pleased, and fortunate, that I was in a position to help and support people, when help and support was needed. I’m incredibly proud of the work that Cyrenians do, and am so proud to have worked there for the time that I did.

I have been off work sick since December 2014, and I have been in the fortunate situation in which my employer was keeping my job for me. This couldn’t last forever though, and as devastated as I was when I was told in December that I may soon have my contract terminated on the grounds of ill-health, I understand why. I admit to having had some less than kind thoughts about Cyrenians in the last few months, I suppose it’s been part of my process, in which I have come to terms with my unemployment. I haven’t left Cyrenians in ‘disgrace’ and it has nothing to do with my performance or ability to do my job, but it took me a while to accept this particular ‘life event’.

Despite the stressy bits, I really loved my job. It took me until I was thirty two years old but I found what I felt was the perfect vocation for me, and I had honestly envisioned myself quite possibly working for Cyrenians for the rest of my life. Not necessarily in the same service, but I admire the Cyrenains values, I share those values and I’ve never had a better employer, or felt more proud about the work that I was doing. My future is pretty uncertain now (oh dear, the song ‘Beauty School Drop Out’ from Grease is now going round my head! “Your future’s so unclear now, what’s left of your career now…”). Sorry, anyway, I don’t know if I will ever be well enough to work again. I hope I will be, but I have no idea what that work will be. I could go back to Cyrenians, I know I’ll be welcome should a suitable job arise, or maybe I’m destined (I don’t believe in destiny or fate, but I can’t think of a better word) to continue my work to raise awareness and campaign for people with ME.

It wasn’t until I got ‘the news’ in December that I really realised how much of my self-worth is tied up in my employment. My initial feelings when I heard the news was that I had lost my value, that I had been stripped of my identity and my feelings of self-worth went down the toilet. I had already not been working for over two years. I was technically employed but on long term sick leave, now I’m properly unemployed, my day-to-day life hasn’t changed. So why all these feelings?! Maybe it’s just reaffirmed the things that I miss the most, the most precious things that I have lost due to my illness; my ability to work, my ability to earn my own living, my ability to live independently, my ability to contribute and my freedom to live my life in the way I choose. Something else that’s been nagging away at me is that unemployment in general, is not looked kindly upon by society. I’ve heard friends, politicians and acquaintances in the past deride unemployed people, I’ve heard them make unfair generalised comments about benefits claimants. Now that I’m one of them, what do those people think about me?

Anyway, I can see this post steering away from the point and developing into a rant about the Tories, so I’ll end this here. (FYI That Tory rant will appear in a future post about my experience so far as a benefits claimant.)

I’m so pleased that I had the opportunity to work for Cyrenians and I’m forever grateful to my three previous colleagues, who were on my interview panel and who gave me a chance. I worked with some amazing people, not just in my service but all over the organisation, I made lovely friends and I learned so so much. I’ll miss the freezing cold depot, I already miss it, but I know they’ll continue doing the fantastic work that they do, for as long as they need to do it.

PS If you like the sound of Cyrenians and the work they do then I’d recommend you follow the CEO, Ewan Aitken’s blog. You may also like to browse the Cyrenians and FareShare websites.

Post Fourteen. ME And Me, By Amelia.

Welcome to my first guest post, written by my very talented niece Amelia, who is twelve years old.

It began a school assignment, ‘A primary seven personal project about a subject of her choice of interest to her’. To my delight and surprise, Amelia chose to do this assignment on the subject of Myalgic Encephalomyelitis (ME), and how my illness affects her. It’s an impressive piece of work. She did her own research, she chose some really descriptive images, and she makes some very interesting and insightful observations. I admit that when I read her first draft, it had me in tears, in a good way! I am just moved beyond belief that Amelia chose to use this as an opportunity to raise awareness of ME, I’m so proud of her, and I’m a little bit in awe of her to be honest. Again this has made me feel so incredibly lucky to have such supportive people in my life.

Everything else you’ll read below, is by Amelia.

ME and Me, by Amelia.

“The good news is, these patients don’t die. The bad news is, these patients don’t die.” Ron Davis – Geneticist

This quote was made by a Californian geneticist whose son suffers from Myalgic Encephalomyelitis.

Myalgic Encephalomyelitis, commonly known as ME is a chronic illness which has affected my family since early 2015 when my Auntie Phoebe was first diagnosed.

In this report I am going to first tell what ME is, how it is caused and some of the symptoms of ME. I will write about the very common misconceptions that many people have regarding ME. I will write about how it affects my Auntie Phoebe and how it affects me and my family. I will also write about what is currently being done to help sufferers and how we can help people who are affected by this horrible illness.

Myalgic Encephalomyelitis

What is it?

Myalgic Encephalomyelitis, also know as ME, is a terrible illness that affects hundreds of thousands of people across the UK and millions worldwide.

It is a neurological illness, which means that there is something physically wrong with the nervous system. It is also a chronic illness, which means it is life long and there is currently no cure. It affects many body systems like the nervous system, which is the network of nerve cells that communicates with the brain, and immune system, which fights germs and diseases.

Many ME sufferers have severe, persistent fatigue. Fatigue is another way of describing extreme tiredness.

Not everyone who has ME will have the same symptoms so it is impossible to compare them to one another. Two people might get ME at the same time from the same probable cause but one could recover in a few years and the other could have it for the rest of their life. That’s one of the reasons why it’s a very hard illness to understand.

FullSizeRender (1)Symptoms of ME

· Post-exertional malaise. This is the extreme exhaustion felt after any physical or mental activity, such as a phone conversation, filling out a form, taking out the bins or making tea, or the worsening of all symptoms.

· Gastro-intestinal problems. These are problems with the stomach, gut and intestines.

· Cognitive dysfunction. This is also known as brain fog. When you have brain fog, you are unable to remember, reason, concentrate and think.

· Headaches

· Sleep problems

· Muscle weakness

· Intense pain all over the body

· Depression, as ME limits human interaction so much so it is easy to become depressed.

FullSizeRender (2)

These are only a few of the many symptoms. Every ME sufferer experiences different symptoms at different times.

Causes

The exact causes of ME are unknown, but there are many theories of what they could be. Here are some of them.

· A viral or bacterial infection that damages your immune system

· Your genes

· A hormonal imbalance

· Immune system problems

FullSizeRender (3)

What can be done?

The NHS have created a treatment plan for ME sufferers that is meant to relieve their symptoms. Many ME specialists disagree strongly with these methods as they have been proven to cause harm to patients. The plan consists of daily exercise, like swimming and walking. ME sufferers are sometimes unable to stand up, how could exercise help them?

It would tire them out so quickly, they would have to interact with others and the payback the next day would be horrific. These plans could worsen patients significantly.

There is no cure for ME. Invest in ME, which is a research charity trying to find a cure for ME, is hopeful that one day there will be a cure. Current treatment can only treat the symptoms, not cure the illness.

FullSizeRender (4)Common Misconceptions of ME

ME is a very misunderstood illness that people don’t take seriously. It is commonly called “yuppie flu”, which is offensive in so many ways to ME sufferers and their families. In the 1980s, it was dismissed as yuppie flu or shirker syndrome. People said that if they went out for some fresh air or even go see a therapist, that they would feel better. Some people said they were faking it or some put it off as being a bit tired. Due to modern research, these horrible remarks and rumours have been proved wrong but there are many people out there whose belief of ME needs to be put straight. The more people that are told the truth about ME, the better.

FullSizeRender (5)

My Experience of ME

My Auntie Phoebe was diagnosed with ME in early 2015.

Before she was diagnosed, she was a shift coordinator working at a food depot run by a homelessness charity. She was in charge of recruiting, training and supervising volunteer workers and helped manage the depot. She organised pick ups and deliveries of food to many charities working with homeless and vulnerable people in Edinburgh. She loved being in such an important position and giving people a chance to get back on to their feet. She also loved driving a forklift truck!

A few months before she become ill, in May 2014, Phoebe was offered her dream job, working at the Penguin Post Office in Port Lockroy, Antarctica. In summer 2014, she started to feel ill and went to several doctors and consultants before being officially diagnosed with ME. Heartbroken, Phoebe had to withdraw from this amazing opportunity. She has been practically house bound since then. Just over a year ago, she had to move from Edinburgh to Peebles to be nearer my Grannie. She had to stop working in 2014 and now lives on (very few) benefits and her savings.

One of the things that Auntie Phoebe does to help her come to terms with her illness is to write a blog called puffins&penguins&me about her experience of ME. It is beautifully written and very informative.

She also encourages her friends and family to hold fundraising events. Last March, the day before Mother’s Day, my mum and I held a fundraiser for Invest in ME. We organised a mother and daughter afternoon tea in the Scout Hut in Currie. We advertised on Facebook and sold etickets. We made many different kinds of cake and sandwiches, served tea and coffee, borrowed massage tables and set up a nail bar so mothers could get pampered by their daughters. We also asked local businesses for raffle prizes and sold tickets. We made £651 and we gave half to Invest in ME and the other half to my gymnastics club.

It was my Grannie’s birthday a few weeks ago, which happened to be on National ME day on 12th May. She threw a party wanting only donations for Invest in ME. She made over £1000!

One of the most difficult things about ME is that sufferers do not look ill. Phoebe went to Grannie’s party and looked beautiful. She managed to stay out for nearly 3 hours, which is the most socialising she has done in years. What people don’t see is the suffering she had the next day.

This is an excerpt from her blog.

“Today I woke up with the worst ‘hangover’ of my life. That’s the best way to describe it. Before you say anything…I only drank water last night, I can’t drink alcohol since I’ve had ME. It took me over two hours after waking up this morning to be able to move and get out of bed, despite desperately needing to pee. I had to crawl to the bathroom, and then back to bed to rest from the overexertion of going to the bathroom. I wanted to brush my teeth but I couldn’t hold my arm up. After another hour of lying down I was able to come upstairs to prepare coffee and something to eat. My head is absolutely pounding, my sinuses are throbbing, my throat hurts, my limbs are heavy, my muscles are aching, there’s an imaginary elephant sitting on each of my shoulders weighing me down, my skin is sore, I’m nauseous, my tonsil wounds are hurting again, it hurts to swallow, I feel faint and dizzy, I’m weak, I feel like I have a temperature (ok, I just checked it and I do have a temperature) and my brain is absolute mush.”

Before she got ME, I would see my auntie all the time, have days out, sleepovers and holidays together. Now Phoebe is so affected by this horrific illness that I rarely see her. Often we arrange to meet her but then she is so ill that we can’t even pop in to say hello or give her a coffee. I love her so much and I would see her everyday if I could.

A Typical Day

These are Phoebe’s words but I have changed them a bit.

  • 10pm – 1am – Falling asleep – this never happens easily and often takes hours.
  • 1am – 11am – Broken sleep, often with hours of wakefulness. A symptom of ME is insomnia.
  • 11am – 2pm – I try to wake up and get up. This can often take hours. When I wake I feel paralysed. I wash my face and brush my teeth and check emails. I can no longer shower every morning.
  • 2pm – I go upstairs and make breakfast. I am completely vegan and eat nothing processed.
  • For the next few hours – I lie on the sofa, sometimes watch tv. I can’t read a book as I can’t focus for long enough. I have to close my eyes for 5 minutes every half hour to regain some energy but I never nap. I slowly prepare dinner, having a rest every few minutes. A 20 minute meal takes over 3 hours to prepare. Sometimes my mum comes in to visit me, she does my dishes and takes out the bins. I listen to music. I suffer from pain every day. I also have sensory overload so I wear noise cancelling headphones and only take them off when I have a visitor. I leave the house every Wednesday for an appointment with my counsellor and rarely leave the house apart from this.
  • Late evening – I go to bed and it all starts all over again.

What you can do to help

I am not going to tell you to become a neurological scientist to help ME sufferers. There is one very simple thing that you can do to help. TELL PEOPLE! All you need to do is tell others about this illness. It doesn’t matter who it is, your mum, dad, grannie, grandpa, uncles, cousins, friends, as long as you are telling someone. Tell them to tell others too! I know it sounds like a movie plot but seriously, just spreading the word can help. So, please help brighten the future of ME and tell everyone you know about this horrible illness.

On Friday 12th May, there was a demonstration outside the Scottish Parliament, trying to persuade SMPs to spend more time understanding this illness. This movement is called #millionsmissing meaning that millions of people are missing out on their lives. It was symbolised outside Parliament by pairs of shoes that never go outside. Here are Auntie Phoebe’s work boots on her forklift truck.

IMG_8664

I know it won’t happen overnight but I really hope that one day, science will have found a cure for ME.

Glossary

Myalgic Encephalomyelitis – A medical condition characterised by long-term fatigue, pain and other symptoms that limit a persons ability to carry out ordinary activities.

Neurological – relating to the anatomy, functions and disorders of the nerves and nervous system.

Post-exertional malaise – The exhaustion felt after any activity and worsening of all symptoms.

Cognitive disfunction – also known as brain fog which means you can’t think clearly.

#millionsmissing – the movement of ME sufferers and supporters to make ME a more understood illness.

Post Thirteen. My Mum’s Birthday/Fundraising Party for Invest In ME.

My mum shares her birthday with ME Awareness Day and last night she held a birthday/fundraising party for Invest In ME. Instead of presents and/or cards she asked for only donations. She still has a few promises of donations to come, but it’s looking like she will have raised over £1000 in total! Incredible!

I attended the party and I don’t know how I did it but I managed to stay for three hours and had multiple conversations with my mum’s friends, mainly answering questions about how ME affects me. It was a lovely evening and a welcome distraction from the terrible week I’ve had.

I knew it was more than I could safely manage. Throughout the evening I knew I should escape to a quiet room to lie down for a rest, but I really didn’t want to drag myself away from the party. I miss out on so much already, I couldn’t bear to miss out on the fun going on around me. So I unadvisedly pushed through.

Today I woke up with the worst ‘hangover’ of my life. That’s the best way to describe it. Before you say anything…I only drank water last night, I can’t drink alcohol since I’ve had ME. It took me over two hours after waking up this morning to be able to move and get out of bed, despite desperately needing to pee. I had to crawl to the bathroom, and then back to bed to rest from the overexertion of going to the bathroom. I wanted to brush my teeth but I couldn’t hold my arm up. After another hour of lying down I was able to come upstairs to prepare coffee and something to eat. My head is absolutely pounding, my sinuses are throbbing, my throat hurts, my limbs are heavy, my muscles are aching, there’s an imaginary elephant sitting on each of my shoulders weighing me down, my skin is sore, I’m nauseous, my tonsil wounds are hurting again, it hurts to swallow, I feel faint and dizzy, I’m weak, I feel like I have a temperature (ok, I just checked it and I do have a temperature) and my brain is absolute mush. I remember feeling like this in the past, but it was easier to cope with when it was self-inflicted through an excess of fun and alcohol. All it took on this occasion was three hours of pleasant conversation the evening before.

This was the first party I’ve attended since 2014, and the first situation I’ve put myself into that I knew would involve constant interaction and conversation with people. I knew it was a risk. This is the worst payback I’ve experienced for quite a while. It’s made me realise that up until last night, I’ve actually been fairly good at pacing and managing my activity to avoid PEM (post exertional malaise). I hope in one evening I haven’t undone any progress I may have made so far. When this bout of payback is over will I go back to how I was doing pre-party? Or is this the beginning of a new phase in my illness? I have no idea. But this is something I have to think about with every single decision I make. I have to weigh up the pros and cons of everything I do. Will the boost to my mental and emotional health outweigh the potential negative and possible long lasting impact on my physical health? I don’t know. It’s impossible to know. I go into everything I do blindly.

While I’m punishing myself for my stupidity and desire to be ‘normal’ for an evening, I can at least take comfort in the fact that the charity, Invest In ME, who campaign for biomedical research into ME, will soon have over £1000 to invest into ME research. This is on top of the money raised by my friends and family in the past few weeks. I have great people in my life who are going out of their way to raise awareness of ME and who are raising money for much needed research.

I’m also quite sure that after this bout of payback fades, that I’ll only have fond memories of a lovely evening. My mum still lives in the house I grew up in, it’s a wonderful and beautiful Victorian house full of lovely memories. It was really lovely last night to see the house and garden so alive with people, chatter and music. The children played on the garden wall and surrounding trees, my niece waited on the guests in style with her bow-tie and flowery Dr Martens. The food was excellent, the wine was flowing (not in my direction obviously) and the live music was a lovely touch. And above all I’m so touched by the incredible generosity of my mum’s friends who donated their time and money, and my wonderful mum, who donated her birthday to help find a cure for ME.

Post Twelve. How You Can Help.

People often ask me what they can do to help me, which is lovely. Within the texts and the emails I receive from my friends I often see ‘I wish I could do something to help you’, or a variation of the same sentiment. Generally speaking, I don’t expect help, no one has any duty nor obligation to help me or make my life easier. But, I have to admit to the fact that I can no longer do everything myself, I do need help. I need to accept help, and what is harder, I need to ask for help.

I’ve known this for a while, but what really brought it home was my recent experience while in week two of my tonsillectomy convalescence. There were a few days when my mum was very ill with a cold, she had a temperature and really had to stay at home and rest. She wasn’t able to do the things she normally does for me, she was just too unwell. For four days I was alone, with ME, post-surgery and with a cold too. I was running out of things that I needed but I couldn’t go to the shops, I can’t even do that on a normal ME day. I felt incredibly lonely, and the isolation made me feel very low in mood. I couldn’t bring myself to reach out and ask anyone to pop by for a visit or to go to the shops for me. I need to be able to ask for help. I really don’t know if my inability, apprehension, discomfort and/or fear of doing so is a normal chronic illness thing, or a Phoebe specific thing. Anyone?

Now, I had already planned a blog post about how my friends and family can help me in terms of raising awareness and fundraising etc, and I’ve decided to expand on that. So this post is to let you know what you can do to help me, should you wish to. There is no pressure and there are no expectations on my part. I’m being very honest and upfront about the variety of ways in which people can help me. But I know people are busy, people have families, and jobs, and worries and stresses of their own, and my needs shouldn’t come before your own. I will however be asking something of you, it’s a big deal, and it isn’t easy for me. But I have to, it’s probably the next step before I one day, maybe, need to hire a carer.

The ways in which you can help me basically boil down to the following…practical support, emotional support, raising awareness/campaigning, and fundraising.

Practical Support

Most of my practical support comes from my mum. She empties my bins, she washes my dishes, she changes my bedding, at the moment she does my cleaning because I’m currently without a paid cleaner, she does my shopping, she washes my hair when I’m too weak and she drives me to appointments. When my mum has been on holiday I have a friend who has stepped in and done some of these things for me, but she really had to push me to accept that she wanted to do these things. Obviously to be able to offer me this kind of practical support you need to live locally, I have friends and family far and wide who I know would help me with the practical stuff if only they lived closer.

My recent experience of suddenly being without my mum for a few days made me realise that I need to put something into place, should this happen again. What I need, I think, is a pool of people who would be happy to be on stand-by for situations like these. Someone who I can text asking if they could fill my prescription, or go to the shops, or put my wheelie bin out etc. But for me to be able to ask this of someone, I need to know, explicitly, that they are happy to do so. A vague offer of ‘let me know if I can do anything for you’, will never result in me asking you to do something for me. Maybe that’s a bit twisted, maybe it’s really weird of me, but that’s how I need it to be. The ‘let me know if I can do anything to help’ offers are kind, but I just don’t know, under such vague terms, what would be too much for me to ask. I think that’s the crux of the matter.

So, if anyone, who lives locally, who I know personally, would be happy to receive a text from me, should I need assistance with something, please let me know. It’s very likely you will at some point receive baked goods in return.

Emotional Support

While my geographically far away friends and family can’t help with my chores they can, and they do, keep my spirits up by keeping in touch via email. I have a few friends and family with whom I keep in regular contact using email, Facebook messenger or text. They check in regularly, they send recipes, articles or music that they think will interest me, and they simply keep in touch, just like they did before I was ill, or more so. I think many understand just how much more I need that, now that I’m so isolated and withdrawn from ‘real life’. Importantly they also understand that there might be a delay of a few days, or weeks, before I can reply, there’s no pressure for me to push myself to reply when I don’t have the energy or strength. I also have a few lovely friends who frequently send me incredibly thoughtful gifts, cards and letters through the post. This is seriously going above and beyond, but it’s always extremely appreciated. It’s a cliché what people say, that during the hard times you learn who your friends are, but it’s true. It really can bring out the best in people, and there’s the opposite, but let’s not dwell on that. At the moment I want to celebrate those who have helped me through this, because I couldn’t do it without them.

What also keeps me going is receiving visitors, this is what I live for. I like catching up with friends in person and chatting over coffee and cake as much as I ever did. Unfortunately with my circumstances being what they are, I have to limit how frequently I can see people and I have to put a time limit on each visit. Scheduling visits can be tricky, and despite my empty life, my calendar fills up remarkably quickly. To help you understand…to avoid PEM (post exertional malaise) I need to rest between activities, so I make it a rule not to schedule activities on consecutive days. Activities can include GP appointments, hospital appointments, Sainsbury’s deliveries, a friend visiting, going for a drive with my mum or counselling appointments etc. So lets say my friend who I maybe only see once or twice a year wants to visit but she can only do weekdays. Well, I have counselling every Wednesday so Wednesday’s are out, I need my rest day before and after counselling so that means Tuesday’s and Thursday’s are out. So we’re left with Monday’s and Friday’s. But if I already have plans for that Saturday then Friday is out, or if I have strayed from my plan and have a GP apt on the Tuesday (because it’s all she had available) then Monday is definitely out. I also try to stick to only one additional activity per week, on top of counselling. More than two activities per week is really pushing it for me, and from past experience I’ve learned it is extremely unwise, no matter how much I want to. Do you see why, despite my empty life, it can become tricky to schedule in a visit? It’s not because I’m living a full and exciting life, it’s because I have to plan everything, meticulously, around my illness and what is best for my health. I am learning, for the first time, how to put myself first, and it doesn’t come naturally to me. I understand that my lack availability might be off putting for you, I might come across as flighty, or like I don’t really want to see you, or like I’m making excuses, but I promise you, I want to see you. We both need to accept that it just might be a few weeks or months away, and that’s ok, it gives me something to look forward to, and I like that.

Raising Awareness and Campaigning

Raising awareness is incredibly important, because no one is going to fund research for an illness they are not aware of. Some people may think they are aware of ME, but the amount of misinformation out there is staggering.

What I want, is for ME to have the same impact as any other serious and life-altering illness/disease/condition. I hate that the world of chronic/serious illness is seemingly divided into cancer and not-cancer, but people ‘get’ cancer, they understand the seriousness of cancer. When you hear that someone has been diagnosed with cancer, you immediately feel the full impact of the horror of that disease. When you hear that someone has been diagnosed with ME, you possibly think they are just a bit tired, that a bit of rest will cure them, that it’s all in their head, that they just need to exercise, that they need to change their diet, that they’re lazy, or you might make a joke about yuppie flu. I’ve heard all of these. What I want is for people to understand the horror of ME. I want people, when hearing that someone they know has been diagnosed with ME, to ‘get’ it. I don’t expect non-sufferers to understand the intricacies of having ME, just like I don’t know the intricacies of having cancer, I’ve never experienced it, but I get the gist. I know that it destroys lives, it can tear families apart and it desperately needs a cure. So does ME; and people, our government, our health care workers, they all need to know that. Understanding would go such a long way in achieving the health equality that we, the 17 million people with ME, deserve.

This is probably the easiest thing I could ask of anyone. If you have a Facebook or Twitter account you can easily spread awareness by sharing any ME articles, or blogs I post. You can sign and share the petitions I share. You can follow the ME pages that I follow. Just by liking what I post on Facebook it will show up on your friends newsfeeds. You can also share my own blog. There’s bound to be at least one of your Facebook friends who thinks that ME is nothing more than ‘being a bit tired’. If sharing articles or my blog posts on your newsfeed can put that one person right, then that’s a job well done, the next time they hear a ‘yuppie flu’ joke they can put that person right. This is how you spread awareness, people power! Spreading awareness is one of the biggest and most meaningful things you can do for me, besides you know, finding a cure.

ME Awareness Month

You may or may not be aware but May is ME Awareness month. I can’t mention everything that is happening this month, this post is already pretty long, but I want to bring the #MillionsMissing movement to your attention.

#MillionsMissing is a movement to raise awareness for ME, which as you know is an underfunded and ignored illness. On May 12th 2017, ME Awareness Day, thirteen cities in nine countries will demand change. We ask for increased government funding for research, clinical trials, medical education and public awareness. I’m delighted to tell you that there will be a protest event in Edinburgh this year. This will be on Friday 12th May 2017 from 12:00 PM to 14:00 PM outside the Scottish Parliament Building. People with ME, their friends, families and carers will be there, and maybe a MSP or two. But there will also be lots of empty pairs of shoes with tags attached, these will be representing the #MillionsMissing. The millions of people with ME who are missing from their jobs, their families, their communities, their lives. Please join in if you can, and tell people, or if you pass the protest and can’t stop, take a quick photo and share on social media, with the #MillionsMissing hashtag. Click on the #MillionsMissing link above and scroll down to the blue section to find your closest protest.

Unrest

I’d also like you to look out for the documentary film, Unrest. Director Jennifer Brea was a journalist and academic studying for a PhD at Harvard. Months before her wedding, she became progressively ill, losing the ability to even sit in a wheelchair. When told by her doctor it was “all in her head,” her response was to start filming from her bed, gradually deploying crews globally to document the world inhabited by millions of patients that medicine forgot. I’m in communication with the Edinburgh Filmhouse to have the film screened there on it’s general release in the autumn, but it will be screened at various film festivals before then. You can also watch Jennifer Brea’s poignant TED talk ‘What happens when you have a disease doctors can’t diagnose’, here.

Please visit my About page to see which additional charities/movements I’d encourage you to follow on social media.

Fundraising

ME is a vastly underfunded illness, especially when based on the impact to the life of a person with ME, when compared to other illness. I couldn’t find relevant information for the UK, but, here is an article estimating the disease burden of ME in the United States and its relation to research funding. It’s pretty grim reading.

Donating money is an easy concept, for those with the financial ability to do so. Fairly recently, I think it was after I wrote Post Nine, a few people got in touch and asked me what my preferred ME charities were, in terms of donating money. If you feel that you would like to make a donation, these are my preferences…

Invest In ME

Invest in ME was formed in 2005 by patients and carers of children with ME. It is run by a small team of dedicated volunteers, the charity has no paid staff and keeps all costs to a minimum. They campaign and fundraise for biomedical research into ME. They really do so much, it would be a whole blog post to do them justice, please check out their website for more information. Invest In ME are my first choice, in terms of monetary donations.

Edinburgh ME Self-Help Group

Founded over 20 years ago, Edinburgh M.E. Self-Help Group (edmesh) is a support group for people with ME. They are a membership organisation run by a committee of volunteers and have no paid staff. Most of the committee have ME themselves.

#MEAction

#MEAction is an international network of patients empowering each other to fight for health equality for ME. It is not structured like a traditional advocacy organisation. They are a platform designed to empower patient advocates and organisations, wherever they might be, with the technological tools and training to do what they are already doing –better. They were founded with the belief that while we may find it difficult to advocate for ourselves in the physical world, in the virtual world, we can be an unstoppable force. This is exactly what I plan do to with the rest of my life, even if I get better, I’ll never stop advocating for people with ME.

Now for anyone who would like to challenge themselves whilst raising money for a ME charity you might be interested in…

Walk for ME

Friends and family of a ME sufferer do a sponsored walk, run or swim on their behalf, hence the name Walk for ME. The aim is to get as many friends and loved ones as possible to do a sponsored walk or other sponsored event during ME Awareness month in May, although it can be held in any other month. Walk for ME supports Invest in ME and ME Research UK. Both of which fund biomedical research and therefore offer the potential to help millions of people get their lives back. The whole idea is that a friend or family member is doing something that their loved one would love to be able to do but can’t because of their illness.

Something a bit easier…

Use the Easyfundraising website to collect free donations by shopping online. First you select your charity of choice on the easyfundraising website, I chose Invest In ME. To raise money, instead of going directly to the retailer website, log into easyfundraising first and click on the retailer you want to shop with. You’ll then be taken to the retailer’s website where you shop as you would normally. But because you visited easyfundraising first, your cause gets a donation.

Thank you!

Now I have some public thank you’s to give.

My friend Jo recently completed a 5k swimathon for Invest In ME, Marie Curie Cancer Care and the Swimathon Foundation. It’s not too late to sponsor her! Here’s a post-swim message from Jo…

“With your help, I’ve raised £235 online for Invest In ME so far. I completed the swim (all 200 lengths) last night in 1 hour 50 something – I was too tired at the end to pay attention to the time I was told. It’s my slowest time but considering how little training I did it wasn’t bad! I was 2nd in my pool last night out of 6 people doing the full 5km so I’ll just remember that fact! I lost count at 28 lengths, kept going for a good long time and had a break at 112 (I asked my counter), then sped up to 150, another few sips of squash and then to the end. A hat and goggles that were too tight combined with my lack of fitness gave me a killer eye/headache so I’ve been pretty lazy today. Almost feeling back to normal now with just achy shoulders. I know many people, especially my ME suffering friends would be ecstatic with that sort of recovery rate – that’s why I’ve raised this money to go towards researching this horrible disease.”

My friends Gillian and Ritchie are taking part in a 5k inflatable obstacle course, Gung-Ho! this month to raise money for Invest In ME. Please support them by sponsoring them in their bouncy endeavour! In Gillian’s words…

“My dear friend Phoebe has ME and since her diagnosis her life has been drastically altered resulting in her having to give up on most of her life time goals and ambitions. Even day to day life that we all take for granted are a struggle for her. I’m sure if you take the time to read her story you will understand how devastating this illness is.”

My 12yr old niece Amelia, with assistance from her mummy, my sister Emma, held a charity Pamper Afternoon Tea for mothers and daughters on Mother’s Day. They raised £631 which was split between Invest In ME and Amelia’s gym, Astro Gymnastics, which is in need of bigger premises. Amelia wanted to include a ME charity in her fundraiser because…

“I chose to raise money for Invest in ME because it is a charity that is very personal to my whole family. My Auntie Phoebe suffers badly from this condition and is currently unable to work, socialise or have any kind of normal life. So it is the best charity we could raise money for. It affects many people and raising money for Invest In ME could help other people with ME. It also will help raise awareness for ME. It is a very misunderstood illness and more people should know about it. We would love for Invest in ME to find a cure for this terrible illness.”

My mum happens to share her birthday with ME International Awareness Day, and this year she is donating her birthday to Invest In ME! She is holding a fundraising birthday garden party and instead of gifts and cards she is asking for only donations. In preparation she is currently experimenting with methods of keeping vast quantities of baked potatoes hot, and she is having hooks put into the back of the house to attach a tarpaulin, in case of rain. Although, so far in her life it has apparently only ever rained on her birthday twice, so the odds are in our favour.

My friends Chiara and Alex are getting married this summer and instead of gifts they would prefer their guests donate money to a charity, a concept that I love. They have chosen Invest In ME as one of their charities.

I have a few other friends who have floated the idea by of fundraising for Invest in ME, and hope to do something in the future, you know who you are, and thank you to you too.

Lastly, all the people who read my blog, who share it, who visit me, who help me with the boring practical stuff, who read the ME articles I post on Facebook, who sign the petitions I share, who keep in contact with me, who send me the articles, recipes and music you think I’ll like, who send me surprises through the post, thank you. x