Wednesday, 30 March 2011

Coping with Night Sweats in ME - the Practicalities, Difficulties, & Shame.

One of the severe ME symptoms I find hard to discuss in any detail & yet causes me huge problems, is what I call 'Meltdowns' - Essentially, super sized night sweats - though I can get them any time of the day or night, awake or asleep. It's an insane, shame making machine of clammy grossness, & generally makes me feel like I'm lying in a swimming pool, not a bed - NOT cool, and terribly embarrassing!

There are many causes for night sweats, including the menopause, other hormonal problems, neurological illness such as MS and ME, & even some cancers. For those of us with Myalgic Encephalomyelitis, it seems to be caused by a combination of our neurological problems with thermoregulation/temperature control, our immune dysfunction, and our endocrine/neuro-endocrine dysfunctions. You can read a lot more about ME symptoms on The Hummingbird's Foundation for ME - it's a very long list of ME symptoms so I suggest you use your browser search tool (ctrl F) to search for 'sweats'. There are several small sections covering it.

Photo copyright Meredith Farmer - Visit her Flickr Site Here!

For me, 'meltdowns' come along or get worse with my body being especially exhausted, after overworking it, if I have adrenaline rushes, or tachycardias, and usually are associated with flashes of heat or chills, (& for some reason, for me, increased pain) and get worse with lack of sleep - ironically, they tend to make my insomnia worse because well, it's not nice to try to sleep in a wet bed, with your hair stuck to your head! It just keeps you from ever getting into the deeper stages of sleep, & ultimately can make me so wide awake that I haven't a hope of getting back to sleep.

Because of this, night sweats aren't purely a comfort issue - they (& the adrenaline rushes often behind them, because they're so exhausting) can easily cause a tidal wave of worsening symptoms. Despite that, none of my doctors have ever been interested in helping me find anything I can do to reduce or eliminate these symptoms. Goes back, yet again, to how once you have an ME or 'CFS'/Chronic Fatigue Syndrome diagnosis in the UK (& many other countries), you're essentially written off by the health service. There is very little of any substance doctors are actually allowed or encouraged to do for us.

Photo copyright Luigi Anzivino - View their Flickr site here
My sweats sometimes get so bad that it basically doesn't matter what I do, I still wake up freezing cold in a bed that seems to have had a recent visit to the Sea. :p I'm not talking a little bit of a damp pillow - I'm saying my hair could literally be wrung out, and my bedsheets & especially pillows are absolutely drenched.

Awake or asleep, I can literally have sweat running down my face & drenching my hair like I've just run a marathon - & my head generally feels like it's been deposited in an oven! And as of yet, I haven't found anything that really stops it. It's all pretty awful physically, and added to that is the emotional factor. Sweating is in our society a bit of a taboo, especially if you're a woman ... and really, it doesn't exactly make you feel attractive. It can be really shameful and difficult to deal with ... makes you want to hide away in a hole & never come out - despite the fact that it's absolutely not our fault!! Just talking about this, I feel quite disgusting, and I'm struggling with finding the courage to actually publish this post!

Bedbound girl in bed by Jennifer Hardt - view her site here!

I do have some coping mechanisms that help me copy, which are worth mentioning. (Note, I'm not going to link to any of the products I'm about to discuss, as I don't want it to seem like I'm advertising them. It's just a list of things that help me - that I want to share with you in case it can help someone else too!)

  • I have waterproof pillow protectors under my pillowcases. Note - don't use, if you can help it, the plastic kind that just crinkle and rattle about under your head - they're super annoying & sure don't help with sleeping, plus they make you feel like a kid who wets the bed, you know? Instead, find the kind that are towelling on the outside and coated in a PU waterproofer on the reverse of the fabric. They're much softer & thinner - though in all honesty they cost more & don't tend to last quite as long as the other types.
  • I also have a waterproof mattress protector, quilted so it doesnt rustle. Expensive, but worth it to protect my much more expensive mattress!!
  • I try to remember to keep spare pillowcases in the room so they can be quickly changed if I need. I can't always lift my pillows to do that though, so it depends on whether my carer is here.
  • Ok, now this is gross, and totally embarrassing - but a quick fix I sometimes use when the pillowcases can't be changed, or when I know I'm only going to sweat more anyway so it's not worth changing them till after I 'wake up' - I dry them with a hairdryer and then try to go back to sleep. When you're bedbound and dependent to any extent on a carer, you don't always have the perfect option of re-making your bed or even changing your pillowcase! Unfortunately, we don't live in an ideal world. I also hate leaving tons of washing for my carer too, so I try not to have the sheets changed constantly.
  • I believe you can actually buy sleepwear specially designed women going through the menopause who get night sweats, which helps wick the sweat away from you so you don't wake up cold - but I've never tried it as I have problems with wearing anything even vaguely heavy - causes too much pain. It's vest tops and shorts for me! Whatever you do though, don't wear silky type clothes if you're having night sweats because they won't absorb any moisture and you'll end up freezing!
  • Always try to make sure you have water by the bed, and keep replacing your fluids. Easier said than done for a lot of us, I know, but important all the same.
  • You can buy special cooling sheets now, made of Tencel fabric - I've never tried them though, too expensive. I always thought they'd be a really good idea though!
  • You can, alternatively, buy a cooling insert for your pillow - the Chillow. Now these are amazing. They have a special gel in them that stays cool, which in turn helps you to cool down. You can even put them in the fridge before bed, if you like your pillow super cool. I find it helps reduce how much I sweat, and also just keeps my head a bit cooler when I am sweating. (It gets radiator hot!) Chillows are designed to stay cool for the first few hours of sleep, then slowly they get a little less cool - just as our bodies are designed to do. It doesn't quite work for me though because my sleeps are so much longer than for most people - so the coldness doesn't last quite long enough. However it helps to a larger extent, and it's well worth the money if you can afford one!! (It also helps when I have a migraine, by the way!)
  • I always have a fan on in the bedroom to keep the air moving around the room. This won't work for everyone, probably depends on your specific reactions to room environment, but for me, I simply can't cope without one, even in the winter! Oddly, I sweat more in a cold room than a hot room - & it's even worse if the temperature is very changeable ... so I try to keep my best to keep the room a stable, warm temperature ... with the fan to cool me down. I suggest experimenting & seeing what works for you. :)
  • I use a lot of talc for when I have milder sweats. It does nothing for the worse ones, of course.
  • You should probably be careful how much caffeine you have, & spicy foods you eat; & how much alcohol you drink.
  • I have heard that for some people, certain vitamins, such as vitamin D, can help reduce or even eliminate night sweats. I'm in a catch 22 here though, because I literally can't afford to buy vitamins every month ... and my doctor always seems reluctant to prescribe them as of course, it costs the NHS money.
  • It's also worth checking your thyroid function. A lot of people with ME may have thyroid problems which can contribute to these symptoms.

Reader Question :

Do you have any coping tactics
which help with night sweats?

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I'd love to hear your reply and I know it'll be valued by other readers too! I always try to respond, please just be aware that it can take me some time to find the energy to do so as I've been particularly ill recently and struggling to get online. Thanks for reading! :)


Thursday, 24 March 2011

Dressing up my Blog in Grown-Up Clothes, & Joining a New ME Blog Ring!

I just wanted to let you guys know that my blog now has it's own sparkly new domain. :) The best place to find it now is (though the old blogspot address will still work!) Yup, the slight ironic amusement of a .me address did occur to me to when choosing which name to go for. ;) (Or maybe that's just me, ha!)

Playing Dress Up In Mum's Shoes
photo by quinn.anya via PhotoRee

I've been having a few teething problems in making the jump to a custom domain, though it could have been worse. Rather annoyingly, I've lost my blog rolls, so if I can't find a way to restore the widget settings, I'll have to re-do them. (Anyone have any idea if there's a way to restore them?) If when my lists are back up, you notice that a blog that was currently on my list is now missing, do send me a note & let me know so I can re-add it. It's hard to remember exactly what I had on there!!

While I'm writing, I'd just like to draw your attention to the new blog ring which Action Now have set up for ME/CFS Bloggers : ME/CFS Blogger Nation.

Blog Rings are a simple method of joining a group of blogs with similar focuses. Each blog has a small banner on their site, connecting it to other blogs in the ring. Thus it's a great way of both networking, & giving better exposure for all of our blogs. :)

You can read more about ME/CFS Blogger Nation on Action Now's site. It only takes a few moments to sign up, though your site then has to be activated by a member of the blog ring team.

You can see an example of the image & links that will be displayed on your blog if you look near the bottom of my right-hand sidebar. :)

ME/CFS Blogger Nation Ring for Bloggers talking about Myalgic Encephalomyelitis & CFS

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I'd love to hear your reply and I know it'll be valued by other readers too! I always try to respond, please just be aware that it can take me some time to find the energy to do so as I've been particularly ill recently and struggling to get online. Thanks for reading! :)


Sunday, 20 March 2011

An Ode To Insomnia

Woman tossing & turning from insomnia by Stephanie Redmond, via

Why is it that when we most need to sleep, when not sleeping is going to make us sicker, that that's when Insomnia rears it's ugly head??!!??

Sulking Child - Image © Joana Virck-Alevra at

I don't have anywhere near as much of a problem with Insomnia now as I did in the first few years after my relapse ... when I would rarely be able to sleep more than a few hours a night, and would regularly be awake for days at a time. But still, now, on the days when sleeping is most vital, it's like my brain has a hissy fit and refuses to play ball - just sits down in the middle of the court, folds it's arms, and sulks with a vengeance.

I'm trying hard to rest and recover from my visit to the dentist this week, my first outing in over 8 months - something I'll try to talk about over the next few days as I'm able - but my body's on high alert and my mind just won't stop buzzing - little wonder considering how much adrenaline seems to be rushing around my system, and how high my pulse is right now! The physical stress of leaving my bed, never mind the house, and undergoing painful dental work has left my body in a pretty bad way. My pain levels have been fairly stable for the last few months, but now they've suddenly kicked off again with a vengeance, and let me tell you, lying awake in mind-numbing pain is not my idea of a good time!! My M.E. is totally kicking my butt!!

Woman lying in pain on bed

All in all, I feel pretty frustrated right now, & I'm dreading trying to sleep today! I've set some essential oils burning to try to calm myself down physically before settling down to sleep (well, my carer has), hopefully that will help. And thank God for my sleeping tablets, Zolpidem, which not only make me sleepy but also go some way towards dulling the pain for a few hours so I can get to sleep initially, which is often my biggest issue.

I found this poem a while ago, by Liza Rosenberg and I find myself thinking of it now when I'm hit by a bout of insomnia - it always makes me smile because it's so me. :) I thought I'd share it with you guys too. Please do check out
her site, she has some really awesome poetry posted there. :)

Ode to Insomnia

Bleary-eyed and body weak
The lack of sleep begins to wreak
Havoc on my tired soul
Exhaustion starts to take its toll

I try to rid my mind of thought
But sadly it is all for naught
For slumber doesn’t want to come
Despite the brain and body numb

So I sit and try to write
Listening to sounds of night
Feeling just a little punchy
Damn it! Now I’ve got the munchies…

Posted With Permission. :)

Image of Question Mark by Salvatore Vuono at
Reader Questions :

What do you guys do to beat Insomnia?

How do you cope with the emotional side of
not sleeping & the increased symptoms that causes?

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I'd love to hear your reply and I know it'll be valued by other readers too! I always try to respond, please just be aware that it can take me some time to find the energy to do so as I've been particularly ill recently and struggling to get online. Thanks for reading! :)


Thursday, 10 March 2011

Heartbeats, Adrenaline, & Dentists - or more accurately, a general ramble about my week.

For the last 4 days or so, I've had one of those strong, heart-thumping-out-of-your-chest tachycardias pretty much constantly, along with a heightened stress reaction to things like sudden noises (bad enough normally but a bit insane right now), my muscles being constantly and painfully tensed, meaning I can't get comfortable. I'm definitely in 'fright' mode, my body ready to respond to some threat that isn't going to come. (Well, unless we count the possibility of a psychiatrist knocking on my door and sectioning me for 'believing' I have M.E. LOL)

I'm on antibiotics right now for a bad(ish) urinary tract infection (I seem to get them all the time) and I guess maybe either the physical stress of the infection, or the antibiotics themselves (or both) could be what's caused this. Whatever ... I just wish it would go away!

It's really exhausting me even beyond normal standards right now. My brain's scattered all over the place even more than my normal state of pretty constant brainfog, - I'm too tired to think, never mind write, or speak - thankfully with these very occasional moments of absolute clarity (which is normally rather hard for me to come by, lol) which I am using to my benefit, allowing me to stay at least a little connected online. So I thought I'd check in with you guys and let you know where I'm at. :)

For those of you who read my post a couple of weeks ago about dental treatments ... the domiciliary dentists who came to see me have arranged an appointment at the surgery to have my broken wisdom tooth removed, in a couple of weeks. They had to find a slot free for the first appointment of the day, so that I can be taken into the dentist pretty much as soon as I arrive. Being a day sleeper, this will be at the very end of my day - but it's a much better alternative than having to wait for an hour, sitting up, in a probably germ infested waiting room.

The only way I can think of to plan for this visit - my first trip out of this house in over 6 months, and only the second in more than a year - is to take painkillers, caffeine & glucose, and possibly half of one of my sleeping tablets (zolpidem) because oddly enough they make me more mobile than usual. (Weird, I know. I have no proof but believe this to be because zolpidem has a very specific affect on the brain - there's research going on using it to bring coma patients back to consciousness!) I honestly don't think this will even be possible without medicating myself first, sigh. Then I'll have to lie down in the back in of the car on the way there & back (which will inevitably cause car sickness and a lot of pain - not to mention a risk of death if we crash lol), with my pillows and body pillow to help support me, and a blanket so I don't get cold - and then get in and out of the surgery as quickly as humanly possible. I have no option but to do it, because if I don't get it sorted now, it will become infected and make a bad situation much, much worse. Any other ideas would be most welcome!!

I'm terrified of collapsing while I'm out. I'm terrified of the actual treatment too, because I have TMJ (jaw joint) issues, making it very painful to have my mouth open for long, and with it being a wisdom tooth it'll be difficult to get to as well. I'm scared because I plain old hate dentists - though I've been working on that fear and it's not so bad as it was. I'm even more scared that I'll crash badly afterwards and go into a worse relapse state, losing the already only tiny bit of independence I have, and the ability to be online. I know there are much worse things than being bedbound in the state I am in right now, because I've been there. And I know that I'm teetering on the edge here already and I don't want to fall over it again and end up back where I was a few years ago when I was regularly having paralysis symptoms, for example.

I'm going to have to rest well over the next couple of weeks, to give myself the best chance of that NOT happening! Rest - funny really, since I'm already bedbound, to talk of rest - to most people my life would seem a constant rest!! How little they know.

'Resting' in bed. (if only I had her hair!)

So now ... if my heart would please stop being silly and calm down, and if my adrenal glands would get that there's no danger and stop pumping that darned adrenaline out, so that I CAN rest and relax, I would really appreciate it! :p

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I'd love to hear your reply and I know it'll be valued by other readers too! I always try to respond, please just be aware that it can take me some time to find the energy to do so as I've been particularly ill recently and struggling to get online. Thanks for reading! :)


Saturday, 5 March 2011

Media Report on The Lyndonville CFS Cluster : The Wall Street Journal

I noticed today that there is a new article, and video, by The Wall Street Journal reporting on the Lyndonville New York cluster of CFS - one of around a dozen such clusters around the World. It's the best press I've seen in quite a while, and it was such a nice change from all the bad press that the PACE trial has given us, that I decided to post it here. :) I wish it would get picked up by the UK news channels, but I imagine I'll be disappointed there!!

The article, written by Amy Docker Marcus, is titled The Puzzle of Chronic Fatigue Syndrome and reports on Dr Bell's (the GP for the area) efforts to research the possible role XMRV may have played in the cluster in his town. He has been treating people affected by the outbreak since the mid 1980's, and this seems to be the closest they've come to finding out what happened to cause such a cluster. Many of his original patients are still very ill, in a lot of pain, & often severely disabled decades after their initial symptoms began.

Dr Bell has had many of his patients from Lyndonville tested for XMRV, a recently discovered retrovirus which could possibly be part of the cause of Myalgic Encephalomyelitis (ME) / CFS, and has found that a high percentage of those tested are indeed infected with the retrovirus. I can only imagine both the hope and fear this has caused amongst his patients. Hope that finally something will be done, that a treatment may be found, or even just a single, validated test for the illness. Fear that this new retrovirus research will be repressed, like other such projects have been in the past.

You know, it strikes me as insane that a disease known for occurring in these types of clusters would be painted as psychological. In what universe does that even make sense?? Essentially what the psycho-social rabble are saying is that these clusters are caused by some kind of mass hysteria. What a load of rubbish!! There are hundreds of people in some of these clusters - it's completely realistic that every single one of them is putting it on, or is in some way mentally ill. So many clusters, across the whole world, many of them beginning at around the same time - that's something that immediately and obviously says there's a good possibility of the cause being an 'infectious agent' - viral or environmental, to any right minded person. It's a tragedy that the issue has been either ignored or maligned by doctors, researchers, and the media ever since the 80's!

Here's a copy of the WSJ Video report. :)

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I'd love to hear your reply and I know it'll be valued by other readers too! I always try to respond, please just be aware that it can take me some time to find the energy to do so as I've been particularly ill recently and struggling to get online. Thanks for reading! :)


Wednesday, 2 March 2011

So I'm a Malingerer, huh?? Warning, bit of a Rant Ahead!!

With all the media rubbish about 'ME/CFS' that's intensified over the last couple of weeks - not to mention the recent changes to the UK benefits system which are going to make things much harder for those with Neurological ME, I've found that quite a lot of frustration has come to the surface which I usually try to keep more or less buried because it takes too much energy to deal with all the emotions.

Something I really hate is that so many people, particularly in the UK, see M.E. as some kind of 'malingerers disease', where we enjoy sitting around being lazy each day, living the high life, never having to bother with work because of our state benefits!! And well, you can't blame them, in some ways, because that impression has been thrown out into the world at every opportunity, through the media, medical schools, psychiatric research projects, and the opinions of the benefit agencies & insurance companies - not to mention the chronic over-diagnosing of this illness, where people who are not neurologically ill are given a diagnosis of ME, (Or rather, ME/CFS) when they are actually burnt-out, depressed, or in some other kind of fatigue state. But the truth of the matter is that those beliefs expose an inherent ignorance about what life is actually like for those of us with severe ME.

I've spent the last 15 years hiding as much of this illness & it's affects as is humanly possible from the people around me, out of shame and fear. It shouldn't have to be that way. We sure wouldn't expect someone with Cancer or Aids to feel they have to do so, right? And I don't want to be that person anymore. I want to get used to being more honest about what I'm going through instead of pasting on a smile and pretending I'm fine while you're here ... then crashing the moment you walk out the door!

I've had M.E. for 15 years now, & I don't think I could even begin to explain the utterly devastating affect this illness has had on my life. I lost a career that I loved. (nursing in a NICU unit, which I fought to keep pursuing for 8 years after I first became ill, despite extreme exhaustion & pain - I certainly don't think that is representative of a person who is looking for an excuse to not work.) I lost the ability to have stable & secure finances; the chance to find a partner who loves me, settle down, and have a family; a whole host of friends who couldn't cope with my complicated situation; my house - as disability benefits (benefits that I actually had to go to tribunal to get, because the doctor who 'examined' me didn't believe in M.E) didn't bring in even near enough money to cover my mortgage (At age 34, I now live in one room of my parents house - a high life indeed!); I've also lost the entire last 7 years of my life (for which time I have been housebound, very often bedbound. For the whole of the past year, I've been unable to even sit up in bed for more than a few minutes at a time - and even that causes pain & extreme fatigue afterwards.); My social life; The ability to walk my two dogs who I love more than life itself; and the right to live with dignity and respect are all gone now too - & that's only the things I can think of off the top of my head!

If one of those people who believes I'm just a malingerer could spend just one week living my life, there's no question in my mind that they would change their position.

Right now, about the only contact I have with the world around me is either through my carer, or on the internet. (I count myself lucky to have that ability as there have been many times over the years when even that was impossible!) Believe it or not, I found out a couple of days ago, on facebook, that my father (Whose house I live in) is making the move to self-employment. I barely see him for a few minutes a week - and the result is that I have no idea what's happening in the lives of my loved ones.

If I manage to go to the bathroom more than twice in a day, then that's a very, very good day. Two times a day is normal - and even that is a battle! I fight with my own body to have a shower once a week. It often takes me up to 2 hours because the crushing fatigue is so disabling that I have to rest every few minutes even using a shower chair ... but I'm too stubborn, proud, and guilt-ridden to ask for help. (though there have been periods in the last few years when I've had no choice but to have my carer help me bathe - Trust me, that is NOT something I would have put up with if I could simply make myself well again with exercise, diet, therapy, anti-depressants, etc etc etc!!!) I'm then wiped out for 2-3 days afterwards. I can't remember the last time I wore make-up regularly, I haven't had a proper haircut in years ... we just take a pair of scissors to my pony tail when it's getting annoyingly long.

Speaking of guilt, that's something else you wouldn't want to live with. My best friend before I became severely ill, has now been caring for me for the last 7 years. She's amazing and I literally couldn't survive without her, but I live every day with the guilt of the burden I'm placing on her. Worse, she's now developed post-viral-syndrome herself, & I can't help but be worried that she may have picked some viral trigger up from me. In addition, since my carer has been so ill, my 60yr old mother has had to start helping out with my laundry, and other jobs, only a few years after she herself became ill with Multiple Myeloma. The pain of all that guilt sometimes feels almost unbearable, like a physical weight on me!

I live everyday in pain, rationing my painkillers as well as I can because I hate taking them. (Another guilt to live with!) Dull pain, Sharp pain, numb, buzzing, urgent, weighted, spasms, migraines - the list goes on!) Sometimes my pain is so extreme that even wearing clothes or the weight of my (lightweight!) blanket on me is too much. I struggle to spend even a few minutes talking with a family member, and crash right afterwards. Light hurts my eyes. Noise hurts my brain. Both send me into a state of overload where it feels like I'm being interrogated! I have blood pressure drops when I stand (or even sit) that make me feel like all the energy is draining right out of my feet. Intense adrenaline rushes, followed by huge crashes. Palpitations. Crazy sweating - as though I have a bad fever only I don't. Insomnia, hypersomnia, (Oh, the irony!!!) sleep cycle reversal. Actually I have a list of symptoms so ridiculously long, (I haven't even got close to naming them all here!) that I felt stupid when I recently presented it to my doctor - who basically had no idea just how bad things are for me as I can rarely make it to the surgery, and she's unable to do home visits. (& this is one of the best doctors I've had since I became severely ill.)

At my worst over the last 7 years, I've had years where the vast majority of my time has had to be spent in a darkened, quiet room, staring at the wall. I've had months where on my worst days, I would be paralysed for hours at a time, not even able to lift my finger, never mind reach out and take a glass of water to drink.

Image of woman sleeping in darkened room copyright Chispita. Visit her Flickr site!>

My neuro symptoms drive me insane. (Haha!) I swear my iq has dropped 50% since I got sick. I can't remember things, (including both old and new memories) I can't recall words, or I come out with the wrong one. (That of course is providing I can actually find the energy to speak at all) I have brain fog so severe at times that I trip over my words and certainly can't make my mind focus on something I want to do, no matter how important it might be. I can't fill in a form by myself. I can't make my mind up about anything. I have problems hearing speech, or the tv, not to mention making my mind understand what's being said. I constantly zone out. A simple conversation with my best friend is exhausting and after a few minutes I just can't concentrate anymore, and my body starts to feel the post-exertional malaise - cos yes, even mental activity can set that off! (The brain is a muscle, after all, which requires energy to function!)

On top of all that, there's been loneliness, grief, sadness, anger, the inability to attend funerals and weddings, or important family events, Christmas days spent in bed. And the stigma, judgement & ignorance of people who don't understand (& aren't willing to try because of all the negative media about M.E.), not to mention medical care that can barely be called care. It's more than enough to boot you in the chest when you're really down. This illness just eats away at you, your life, & your coping abilities. It destroys family life. It damages your sense of self and worth. It takes away the liberty to be the person you feel really are.

How can anyone who's never lived with M.E. ever really understand what a price we pay to live this 'high life'??

Nobody chooses to live this way. It's forced upon us - and we have to learn to deal with it. The only other option is unthinkable - and we fight that option along with all the other fights, for the sake of the people who love us - and because we really do want to find enjoyment & happiness in our lives.

I just wish that the people spinning ME as a psychiatric illness would stop and listen for a moment. Choose to care about us as individuals and realise that something much more is going on here.

Why doesn't medicine learn from past mistakes. Parkinsons, MS, Aids, Epilepsy - so many illnesses, all treated with disbelief, prejudice, and cruelty, & labelled without scientific proof as hysteria, depression, hypochondria, etc. Those previous beliefs were proved to not only be wrong, and unjust - but also stupid and dangerous because so many people died before the medics and governments started to pay proper attention - not to mention the millions of lives which were wrecked in the process.

ME patients are talked about in the media and amongst medical circles as 'radicalised' conspiracy theorists, which I find highly offensive - but really, why would anyone be surprised by how strongly we feel about this and how hard we're willing to fight to create change??!!?? We're desperate. It's that simple. I've been living with ME for 15 years, and in that time, nothing has really changed - the same old stuff is happening over and again. I'm not radicalised, I don't send 'hate mail' or bomb cars, for heavens sake. I just don't agree with anyone who says that my illness is all in my head, and I'm willing to say so.

And that's my epic rant complete. (Sorry about the crazy length!!) All I can do now is try to move on, to pick up the pieces all over again and deal with the emotional fallout of this latest injustice ... and remind myself that change will come! Facts & evidence will eventually appear that are absolutely irrefutable, like they have for other illnesses before ours, and action will have to be taken.

Reader question about losses from neurological ME CFS

What have your greatest losses been over the course of your illness?

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I'd love to hear your reply and I know it'll be valued by other readers too! I always try to respond, please just be aware that it can take me some time to find the energy to do so as I've been particularly ill recently and struggling to get online. Thanks for reading! :)