An Introduction -Part One

For those of us living on the edges of society, as we have been for decades now (people with MyalgicEncephalomyelitis and other marginalised conditions), I am coming to feel slightly less alone and slightly less in a minority of the ‘Missing In Action’ from life, as sadly and as expected, the cases of Long Covid / M.E. rise.  

This is an introduction to the next part of the article that will mainly discuss the Subject of Wintering, briefly prompted by reading a book at a friends house whilst house sitting last year.  

With people now in their hundreds, possibly thousands, having to leave work due to the long lasting effects and mass disablement of large parts of our society, it is becoming apparent that history does often repeat itself, with outbreaks and pandemics being no exception.  

It is not mental health alone that is the cause of millions more missing, which seems to be the narrative for a lot of things, often reported in news stories as the main reason many are unable to or have had to leave work.  This will be true for many, and especially those who have lost loved ones, or for those who have been shielding and are not adequately protected in public spaces, and those from healthcare settings in the fall-out from the height of the pandemic.  Viral aftershocks are, as too many of us know, often drawn out and persistent.

Anxiety seems to be the preferred diagnosis that dismisses many of us, and often used as a catch-all way to deal with many problems in health. For those with debilitating anxiety it is a serious issue and often needs much more intervention than CBT and mindfulness alone, often arising from deep rooted issues or trauma, where EMDR might be more effective if it’s trauma related.

Then there’s health anxiety connected to those already vulnerable, and the re-learning of social skills, in regards to mental health well-being, and those with neurodiversity too; especially difficult for youngsters who have missed out on vital skills within school environments for example, which will be further compounded with the push for more use of AI, despite it also bringing positive routes to health too.  

The way it is utilised will be the decider for that.  

So it’s a real complex picture in the times that we’re living in that cannot be put into a one-size-fits-all approach, as it too often does.

I do not intend to ever downplay the many mental health conditions and learning disabilities out there that people often struggle with alone, that need the proper help and the support they deserve. The awareness is being amplified and more connections are being made in relation to M.E. Long Covid, hyper-mobility syndromes, connective tissue disorders, ADHD, AuDHD, hormones and neuro-hormones, the peri-menopause and menopause; UTI’s, Endometriosis, auto-immune diseases and so on.  Neuroscience plays a big part here too, and we are aware of the impact of the gut-brain-axis via the vagus nerve, which influences mood and are where our immune systems reside.  More joined up holistic approaches in medicine are advancing and Womens’ health, sorely neglected for far too long now is starting to see some progress.

Research for M.E. we are aware is already 20 years behind.

We know obesity and diabetes was on the rise pre-pandemic and now there’s many more associated issues we’re becoming aware of now too, as post viral SARSCOV2 reveals its trail of multi-system disorders. 

Some of these debilitating (mental health) issues reflect in some ways on the neurological aspects of the viral impact where cognition, mood and memory is affected.  We are yet to know the real extent of this damage, and whether it is long-term.  Many papers have already suggested a rise in Dementia and Alzheimers, greater risk of stroke, cardiac arrest and so on, as vascular and limbic systems are overworked.

Daneille Beckman speaks with Unite to Fight

Be sure to take a look at all the amazing imagery from Danielle on the link below the image. The Alzheimer’s disease is perhaps my favourite image, both stunning and deadly, enabling us to see the beautiful patterns of the mind. Danielle compares our brains to that of space on her landing page, showing imagery from space and on earth.

I am not medically qualified, but due to the distinct lack of medical care as someone with M.E. and having developed new and scary symptoms such as worsening brain inflammation myself, I have had to find research to help myself over the last 17 years, in an effort to try and understand what’s happening in my body and perhaps see how I might be able to help it somehow. It is obvious how desperate people become when dealing with a life changing medical anomoly, as with M.E. we will do whatever we can to feel better and get back to our lives if at all possible, as the Sick Times reports.

Just to be able to function at a low baseline, I take a minimum of 8 supplements per day. 

I have read a lot about these issues relating to my own anomaly of a body and immune system which is dysregulated in many ways due to previous post viral infections, having led to MyalgicEncephalomyelitis in my case; so any new infection, particularly SARS-COV-2 can take months to recover from and bring with it new, worsening and long lasting symptoms, often causing long relapses, as I’ve found out over the last 3 years, taking even longer than the usual cold and flu’s (although can still take months with those), and bringing with it new ‘gifts'.’ The set belief of many in herd-immunity does not apply in many cases.

The work of Science Media  as many people with M.E. know has a lot to answer for, as George Monbiot and Dave Tuller previously spoke about regarding the M.E. scandal. Others who have spoken about the scandal include Dr Nigel Speight, who can also be seen chatting with Daniel Moore on his YouTube channel and see also his Podcast PemPod with Dov Zeller; again Dave Tuller, and more recently, Chris Ponting, Chair of Medical Bioinformatics at Edinburgh University and a Principal Investigator at the MRC Human Genetics Unit, Institute of Genetics and Molecular Medicine. (DecodeME). Look out in part 2 for a brilliantly researched article by Amanada Francey ‘Within Four Walls’ which includes a comprehensive, albeit shocking history; and YouTube videos from Adam aka ‘A Broken Battery.’ I’ll be sure to include his incredibly well produced and documented: ‘The Greatest Medical Scandal’ video there too.

Jennie Jacques has also recently spoken with Chris Ponting and Dave Tuller on her YouTube channel, as well as the family of Merryn Crofts. And those of us following Maeve Boothby-O’Neill’s inquest last year, amongst seeing many assisted deaths, and campaigning for women in UK hospitals and abroad, like Millie McAinsh and Katiana it’s been a rough ride lately. Witnessing all of this in 2024 has been distressing to say the least, but we have to advocate where we can, and if we can. The Canary continues to help advocate for those less able by providing access to things like public consultations which many of us are in the dark about or cannot access due to chronic illness. Did you know about this?

As people with M.E. know all too well, it is often easier to blame the patient when presented with something beyond current expertise. We know it is down to pitiful funding that there are still yet no answers for us.  Mental health however is a vital component for survival of long term chronic ill health because you will need it to keep going.  Anyone diagnosed with a devastating and ongoing life changing condition will need mental health support and it is one part of a very large picture of well-being.  When it’s something that stops you living your life as you once knew it, ’Wintering’ stays all year round.

It has already happened to so many, and will continue to happen as SARS-COV-2 variants mutate and take hold, in the clever and deadly way some viruses manage to do.  

The full effects of the last 5-6 years and ongoing mutations with variants is yet to reveal the full scale of disability and untold damage.  As measurable infection rates continue, they are, it has been reported, changing and damaging our immune systems, blood, and organs such as the brain. Those of us with M.E. know all too well about over-active immune systems and dysregulation.

Be thankful if you’re genetically robust in this case, although without the science to back anything up fully yet in this department, it is not a given you won’t somehow be affected. Read more here and here. There are countless more articles besides. Only today I was watching this video with Nancy Klimas and Cort Johnson.

Those of us with M.E. await the results this year of the DecodeME study with anticipation and optimism - that we may find indication for a bio marker by studying genetics, which could provide answers that could potentially lead to treatment for our neuro-immune disorder.  There are many scientific papers out there and we are seeing new ones all the time from many reputable sources and those by experts in infectious diseases, neuroscience and more besides. 

As for H5N1, preparations are being made as future outbreaks seem potentially imminent. Human to human transmission hopefully is not so much of a possibility.

The rediscovery for many, of hibernation as a need to repair and recover has become more apparent to the masses, which is why I wanted to talk about the subject of ‘Wintering’ in relation to this. 

Not to be too pessimistic at the start of 2025, but reality often takes over when trying to recover from new infections that hit us from more new variants and shedding. It is the norm that it takes many of us at least two months or more (or never), especially with M.E. to return to what was already a low baseline of existence with the added layer of a viral load (and by baseline, I mean being able to get dressed and out on average for a few hours 2-3 times a week if we’re lucky), and only if you’re ‘mild-moderate’ for example in my case, everyone is different.

Sometimes I don’t get out for 2 weeks or more depending on consequences of things I’ve done/had to do or due to stress and events out of my control. Sometimes I’ll get a week, or two if I’m really lucky where I feel like I’m almost free from the cruel restraints, only to then be brought back down to earth again. It has been my ‘new normal’ for many years now, and doesn’t get any less frustrating. With a new virus hitting on top of this, it’s a real cytokine storm and mitochondrial mess.

Those who are new to this will find themselves going through the many stages of grief if it changes their lives dramatically.

Sadly, many have gone back to severe and very severe M.E. as a result of the pandemic and some people have had negative immune reactivations via vaccines which is equally scary and not something I wanted to risk as I’d rather die than be severe again (I am not anti-vaccine by the way). I’d loved to have been able to make an informed decision about that as a person with M.E. but sadly medical research has neglected us so there is no information for us as there’s not been any real funding in this area for decades. I was left out of having that choice, and that was scary, especially at the height of the pandemic.

We know the long term affects of viruses only too well. It’s what disabled many of us in the first place. So reality checks are often, especially this time of year, when we get out even less than usual because we pick up more of the barrage of germs that often lay us up for months again, and just like that it feels like another year gone by so quickly and more missed out on in life. I’d say for myself out of every year I get 2-4 full months of a kind of actual living and doing, feeling like a part of it (life / the world). And I am one of the ‘lucky’ ones with M.E.

As we all try to navigate our way through the winter and year round virus mutations, and consequences of said mutations, such as MCAS (Mast Cell Activation Syndrome), Dysautonomia and worsening POTS, neck and spinal issues / inflammation of the neck and spine, I prepare myself for more isolation and my ‘specialist subject’ of Wintering.  A term I only just learnt even exists, and only because of a book I saw that a friend had.  Many people with M.E. have been doing this wintering thing incredibly well considering (and often, not so well as isolation and the torture of this disease becomes unbearably lonely after years of it, so suicide is a big risk for us).

As we are forced to be still, consistently rest and pace, our lives reduced more often, to next to nothing, with no regularity of being able to do the same thing on the same day every week; we try to live our lives the best we can. In this state due to long term-disease thrust upon us, we get little support, having had to live this way for decades now.  For us, our lives are Winter all year round in so many ways.

I could talk about papers and recent articles written about the ‘Spanish flu’ the one back in 1918 that people have been discussing lately on platforms of the well informed, but you can do your own research if you so wish on that. There are many others on a variety of viruses throughout history that we can learn from and we all know about the devastating impact and stigma around HIV and the AIDS virus, so brilliantly and poignantly brought to life in the Channel 4 series by Olly Alexander in ‘It’s a Sin.’ 

Connections are being made with Acquired Immune Deficiency in those of us with M.E. and now Long Covid, in that the immune response is working in a similar way, from some of the latest T-Cell studies. I am still learning myself about the differences between enteroviruses and retroviruses, and there is talk of a trial for studies of an mRNA vaccine for EBV (Epstein Barr Virus / aka Glandiular Fever). The Sick Times wrote about this recently too.

Wintering all too often without Friends…

There are so many stories from those of us who have been ghosted by who we once thought were our friends, often because they are unable to accept the inconvenient truth that disability could happen to them too, which is often the reason for distancing themselves from us we have learnt, much like animals do if there’s a sick one in the group. It’s life, and human nature in many ways, although it makes me feel sad to hear myself say this, because what you often expect from other humans is compassion. It is only because I’ve had to accept it as the norm that this often appears to be the case from the societal response to my ongoing disease. The psychological paradigm for M.E. is slowly changing, but not fast enough to save women’s lives yet, and it is also hindered by a lot of negative or misinformed media messaging and propaganda. Progress is slow.

The consequences are all too real for some, and the thought that it could just as easily happen to them is too much for them to see or bear. I’m grateful for the few friends I can count on one hand who have hung in there, even if I only get to see them or spend time with them a few times a year (living far away doesn’t help), and their busy family and working lives are so very different to mine which means this is a given.

It is another consequence of the stepping stones that lead to this from ill health and stigmatisation. Relationships are very difficult to maintain when life fluctuates so cruelly with disability, you have to get used to wintering very quickly for a long time. I haven’t had a social life for years now.

I rarely get chance to chat freely with friends anymore as everyone’s lives are incredibly busy and very different from my half-life.  It is often so difficult and breaks my heart when I converse with the able-bodied that I find myself being able to do it less and less as it amplifies all those aspects that have been and are still missing from my life.  It seems to throw them back in my face with considerable force, the impact of which leaves me feeling utterly deflated. It can be absolutely soul destroying and is a part of the perpetual grief we go through in our everyday lives.

Being grateful for what I do have (left) sometimes keeps this in check but when it hits, it often comes out of nowhere.  It reminds me of how small my world has become due to the type of disability I live with. My normality is very different: dictated by a myriad of symptoms where there is never a day off and it’s always changing, so I never know where I am or what to do half the time. My ‘life’ is very different to everyone I know, apart from those in the same boat as me (online).  So, here I am, alone, discussing these things with myself and my attempt at a social life of sorts with my online community.  

I’m hoping this helps someone by writing this as I have a lot to be grateful for too, but this is our reality and we need to feel justified in our outcries for this prison-life that needs much more compassionate intervention from healthcare and soceity.

And, if you ever see me out actually having fun (a rarity nowadays), then big me up cos it’s probably been a while and no doubt I’ll pay heavily for it too. I’d love to just dance it out, all that pent up frustration (which I often have done to great detriment to my body), but sometimes it’s worth it, because what a joy and a privilege it is. It was how I used to keep my mental health in check and it was my job too. I loved being able to exercise, have fun and move my body freely without having to mitigate the risks. Sometimes I’m brave and do it anyway, when I get so fed up and feel like I’m going to explode, but I have to have recovery time planned in. It’s been at least 3/4 years since I last did that. ‘Feel the fear and do it anyway’ is not helpful to people with M.E. For me it’s mental gain and physical pain/months of pay back or potential serious relapse and further permanent disability. The odds are against us there. The fear of it is not the problem, it’s the brutal consequence and the reality of PESE/PENE. Read about that in Part 2.

For some of us our disabilities are a defining factor in who we are and have had to become, which betrays our very identity. The phrase ‘My disability does not define me’ is not necessarily so for us and is for us a kind of toxic positivity trope, of which there are a few out there. It’s all very well but it doesn’t match up with the expectations of society and the blatant everyday ableism we have to contend with. There’s a lot of ableism in disability sport for example as none of it is really catered towards us. The very hallmark of our disease is unique in that exercise is contraindicated and causes further deterioration. Movement has to be carefully executed to avoid PENE/PESE/PEM (unless you want to induce a world of pain and relapse as I used to do more often in boom and bust). I’d love it if there was a category for adaptive surfing for example, according to energy and bravery just for being able to get a wetsuit on and spend ten minutes in the water (the recovery time being factored in as an indicator of exertion rates to be added to the overall score of exertion vs impact taken by the body). In its own way, PEM turns Newton’s Third Law of Motion on its head in that there is an unequal reaction to exertion for people with M.E.

We have to dull the very core of our personalities to protect our health (vibrant, vivacious outgoing, enthusiastic, excited, physically expressing ourselves), can all be harmful and trigger PENE/PESE (Part Two will explain), so this makes it even harder to try to create a balance and be ourselves.  How can you ever accept not being able to be who you really are, the vey core of your personality? It’s like constantly dulling your light, going against everything that human endeavour strives for.

If you have an ADHD and an M.E. diagnosis. It’s a constant battle of two opposing forces and with M.E. there are times of hyper adrenalined states where sleep is disturbed and then a crash ensues.  This is why we need endocrine research studies due to disrupted hormonal activity and further assistance with Orthostatic Intolerance, a group of circulatory disorders brought on by upright posture as Dr Peter Rowe discusses with Jennie Jacques here, and as contributor to this paper. Some of this discussion might explain the spikes in adrenalin that I experience and palpitations I get even when lying down, which are according to Dr Claire Taylor most likely Dysautonomia. Slowly I’m learning more.

I am optimistically (as always), working on a new project to hopefully attempt once again to create a role for myself in the near future, so if in that near future, if I’m in a more enjoyable social setting again and feel like I can meet new people without the added prejudice, I can get back to finally being able to reply with something positive and joyful when somebody asks “what do you do”. Only then will I once again feel like a valued part of this society.  I’ve become used to downplaying and hiding my disability because it takes too many spoons to keep explaining something that should be as understood as someone saying they have cancer, MS, or Alzheimer’s, although there’s always work to do there too. It should not be left to us alone. It’s exhausting and distressing. The messaging needs to be better within society.

I’m hoping to help others navigate the limitations of disability like mine in an attempt to try and get back to something resembling a job again, if I can work enough hours to make it pay for the roof over my head; a bit like the role that I once had, the one I loved and worked so hard to finally do before it was cruelly snatched away after just 7 months. Something I know I’m good at and was doing so well with until I was stopped in my tracks, with no help coming.

A major relapse in 2008 followed by Swine flu on top of an M.E relapse is where I’m still trying to pick up from.  It’s been a long road and I’ve still not yet been met halfway by healthcare.  For now, I write and I’m grateful for that.  It’s lonely but sometimes I can imagine here that I’m talking to or reaching somebody that it might help. It’s another article that’s far too long, probably because I have to have these conversations alone and dont get to talk to other people about this in real life, or talk to people very often at all. Not many able-bodied people want to discuss these subjects, so here I am online again rattling on as usual. I am fizzing with ideas and concepts, creativity and boundless enthusiasm for a life that could be, but for now I winter on and continue to do whatever can help me.

I’m also writing a book to help represent those of us with M.E. That is a work in slow progress, and more enjoyable than writing about our ongoing reality with M.E. but sometimes that’s necessary too (there are elements of reality in it because you know, M.E). Representation is vital and it cannot be avoided if we are going to make any progress.  There might be more than one book and I’d love to collaborate on a screenplay, but my energy limiting multi-system disorder means this tortoise-style /hyper-crocodile dual mode of existence thrust upon me for so long now (including recent viral persistence taking hold), may take a while to fulfil said ambitions. I have a ton of poetry too that I’m hoping to share somehow, maybe use as lyrics and get my ukulele out.  First I have physical stuff to sort in my house from previous projects that didn’t work out, due mainly to the constraints of M.E. (and other co-morbidities), and until I can physically sort those out, I have to wait and be patient.  My Christmas stuff has to go in the attic even before that, to be packed and out of the way first, so that’s another week just centred around that due to the amount of rest and recuperation that job requires either side and the fact I have no help around.  It’s been sat there for 2 weeks now. You see how this works?

With limited resources or opportunities to collaborate with others, to be able to assemble and organise projects in a productive way it’s always tricky to navigate these processes.  For now, we are often misrepresented in media via films and TV programmes and I want to help put this right. After all isn’t the lived experience the most important one here?

So, let’s get to it.

This was an introduction - On The Subject of Wintering, Part One, from the perspective of a constant winterer, a veteran if you like.

Part Two coming up.

I’m dedicating Part One to Sammy Lincroft…

Below are images of Sammy Lincroft from social media, in memory, and some images of her advocacy for people with M.E.

‘What gives you the most hope on your bad days? 

What helps me get through my days is the severe ME/CFS community. Despite my struggles, I see so many other patients who suffer everything I do without the support network I have. While I feel cursed by my illness, I feel incredibly privileged and blessed to have a loving family who understands and respects my limitations and does everything in their power to provide me with care.

The ME/CFS community, by necessity, rejects the idea that our value is our productivity. We value each other because we are human beings deserving of love and respect.

ME/CFS can make you feel powerless because so much of our power lies in our ability to act. But ME/CFS has also provided me with insight and wisdom, something I see time and time again throughout our community.’

SOURCE

The thoughts and opinions based in this article are my own. Please conduct your own research for more information relating to the scientific studies I’ve mentioned here and the summisation I have communicated about such studies. I hope one day we will have the treatment options we deserve and medical science will catch up in time so more of us can live fulfilling lives that are worth living. Thank you for reading, especially if you made it to the end. TBC…

Madeleine x