Author Archives: Jak

Left Out

My best mate and I both developed M.E. in our early twenties and have been largely housebound for our entire adult lives.  In the last few years we’ve both taken the huge step to join social groups, my mate for botany and me for photography.  I say “huge step” deliberately.  Not only is taking part in a social group with healthy people physically demanding it’s also mentally demanding and a social minefield.

We were having a coffee the other day when my friend told me she was struggling with the social aspects of being in a group and she couldn’t understand why she was finding it so difficult.  “I fucking hate small talk” she said, “and I get frustrated and irritated when they all piss about and take ages, when all I want to do is crack on”.  I knew exactly where she was coming from.

When I joined my camera club 6 years ago I was all at sea.  I go to bed every single day at 3.30pm, so to have to get up again at 6pm, get dressed and get myself into town, not to mention sitting upright on a hard chair without my feet elevated for 2 whole hours, was a monumental physical feat every single week.  Then I had to concentrate on what was being said, and concentration is something I struggle with during the day let alone in the evenings.  But on top of all that I had to interact with other people, which I found hugely challenging.  I had the social skills of a 25 year old, not a 45 year old.  The last time I’d been around other people I’d still really been a kid, and I’d missed out on 20 years of learning the art of being in a social group.  Because of my brain injury I also don’t pick up on non-verbal clues like body language or nuances in tone of voice – I do well to just follow a conversation for crying out loud, especially in an evening when I’m knackered and am feeling dizzy and faint due to being upright!

Then there’s the getting to know people issue and the dreaded “so, what do you do?” question. My personal life, and my personal health, is not the business of some stranger I’ve just met but on the other hand this person may become a friend in the future, so how much do you actually say about your situation?  I’m a very open person in general and don’t have huge issues talking about my health.  My friend, OTOH, is much more reserved and struggles to talk about herself.  Then, of course, there’s the whole issue of how M.E. presents itself.  Even my own family initially found it hard to understand payback and Post Exertional Malaise, particularly when I look so well, and I know members of the public often can’t get their heads around our lives and the fact we can do an activity one day but not the next, or we can do one type of activity but not another.

Occasionally, both myself and my mate go on trips out with our respective social groups.  We both find them frustrating experiences.  People like to faff.  They take ages getting their kit out of the car boot, putting their anoraks on, deciding which route to take and generally just arsing about, and we don’t have that luxury.  Every second that ticks by our precious energy is disappearing, so we need to get going with the task at hand.  Then there’s the fact we can’t concentrate and talk at the same time.  So while other people are wanting to chat to us while we’re taking pictures, or collecting plant samples, we find that annoying as all hell and can end up snapping at people without meaning to.

Then there’s having to accommodate other people’s wishes.  The rest of the group might want to spend 30 minutes photographing a boat I’m not the slightest bit interested in.  Do I use up half an hour of my energy photographing the boat, or do I go off on my own and photograph what I am interested in?  Both my friend and I agreed we often end up leaving the group, going off and doing our own thing in peace and quiet which makes us look anti-social and like we’re not interested in making friends.  Which isn’t the case at all, but M.E. is a very selfish disease – you barely have the energy to do your own thing, let alone accommodate other people’s things, and both my friend and I do everything at break-neck speed because we’re so conscious that our energy is finite and we need to get stuff done before it runs out.

After we’ve finished our botany or photography our group wants to go to the pub for a beer and a natter…………only we’ve used up every ounce of energy we possess.  So, we either go along, sit quietly in a corner white as a sheet and don’t join in because we’ve conked, or we say “no thanks” and the rest of the group think we’re not interested in spending time with them.  It’s a huge dilemma and one I simply don’t have the answer to.

My friend and I both agreed that if we had, for example, a broken leg the group would happily accommodate that.  We wouldn’t be expected to climb stiles, or stand around for ages and they’d accept that at the end of the evening our leg would be hurting so we’d want to go home rather than to the pub.  But when we look completely fine and our health problems are invisible being in a social group becomes a minefield and despite our best efforts there can be misunderstandings and we can end up feeling excluded.

I think my friend and I both came to the conclusion that initially we have to give more information out about ourselves than we are comfortable with, and having done that we have to accept that not everyone will be understanding.  We do have to be more selfish than we’d like – after all, we’re there for our enjoyment and if that means going off and doing our own thing on our own then so be it.  As long as, when we are with the group, we make an effort to be chatty and join in that’s all we can do.  If we’re struggling or feeling unwell, we should say something and when we next meet up we should fess up about PEM and how we’d felt in the days following our outing.  No-one wants to feel vulnerable or pitied, but unless we tell the people we are with about our situation they’re not going to know.

Having a chronic illness in a group situation is never going to be the same as being healthy in a group situation, and it’s normal to feel upset about that.  I think we are often way too hard on ourselves – we can only do what we can do, and other people will either accept that or they won’t.



Weekly roundup

I have news about my Dad.  As regular readers will know, 2 years ago he started having weak legs and to cut a very long story short he went from walking miles up the fells every week to needing a wheelchair.  We discovered he had severe sensorimotor polyneuropathy but the Doctors couldn’t find a cause.  We were all baffled.  At our last meeting with the neurologist my Dad flippantly mentioned that he had a very dry mouth.  We’d told his GP but he’s on prostate medication, the side effect of which is a dry mouth, so it was put down to that however it can also be a symptom of the auto-immune disease Sjogren’s Syndrome.  SS, if left untreated, can cause neuropathy so in a last-ditch attempt the Neurologist ordered a lip biopsy which was done last month.  And low and behold it has come back positive for SS!  90% of SS patients are women (although it begs the question if men simply go undiagnosed) but men who get SS do tend to have a more severe form of the disease.  Not only can SS affect the nervous system it can also affect the brain, causing memory loss and confusion.  My Dad was diagnosed with mild dementia 2 years ago, so now I’m wondering how much of his cognitive symptoms could possibly be SS related.  We have been referred to a Rheumatologist at our local hospital and are just waiting for an appointment.  I’m so chuffed a reason for his neuropathy has been found – knowing what’s wrong with you is half the battle as we all know.

I was feet away from being blown to Kingdom Come this week.  Our summer so far in the UK has been a total washout bar one mini heatwave, and the north of England is suffering flooding.  We have had some wicked thunder storms and during one such event this week lightning struck the road right outside my house 😮  The bang was so loud I thought a bomb had gone off and I genuinely expected to look outside and see something on fire.  Luckily nothing big was hit, though mine and 3 of my neighbour’s wifi routers stopped working.  Mine eventually came back on, but my neighbours’ routers all blew so they are having to have them replaced.  One neighbour has also lost his Freeview TV signal so it must have blown the cable or something.   To add insult to injury, two hours later the UK was subject to a mass power outage and all the electric went off, just as we were all cooking our suppers.  It was not a good day.

In between all that, I have had my house valued.  I had no idea Estate Agents were going to charge nearly £3000 to sell my property, so am considering going with Purple Bricks instead and selling it independently.  I have a couple of questions I need answers to first, though, before I decide.  I went for a 2nd viewing on the bungalow and discovered it is more poorly than I’d originally realized.  The annexe I would use as a photography studio is coming away from the garage it’s built on to, there is damp on the lounge walls and ceiling, and the floors and ceilings in the main house are all sloping :-/ I think my next step is to pay for a structural survey before I can decide what level of offer to put forward, the money for which I might lose if I don’t end up purchasing the property.  Having to have the concrete floors dug up and re-laid is a massive, expensive, noisy and dirty job and I would probably have to move out for a week while it was being done, however it is purely because the house needs this level of work that I can even begin to afford it.

I am currently on day 40 of my cycle.  I have constant lower back ache and niggly period pains, plus god-awful heartburn (which I often get just before my period as my connective tissue become extra lax), but my period is awol.  For the first time I am also really noticing heat.  I’m not having hot flushes or sweating, I just feel boiling hot all over and despite the fact it’s currently 11C outside the thought of wearing anything other than shorts and a cami top is suffocating.  I let Bertie sleep under the duvet last night as I had the ceiling fan on full pelt – he lay there shivering but I was still on fire 😉  I also have a constant ravenous appetite, speaking of which I’m in need of some breakfast – I shall refrain from having ice cream being as though it’s only 7.30am but I can’t guarantee I’ll go the whole day without a scoop or two of salted caramel freshly made with milk from Jersey cows on the farm up the road.   I tell myself the salt is good for my low blood pressure and the protein and B12 in the milk is vital to my vegetarian diet.  Looking at it like that it’s positively a health food 😀


Weekly roundup

This week has gone by in the blink of an eye.  I usually do my Roundup first thing on a Sunday morning, but because I’d actually forgotten today was Sunday (it feels like a Friday in my head for some reason!) it didn’t get done.  Not that I have anything exciting to tell you.

My lounge was decorated this week.  It hasn’t been done for 8 years and was looking a bit tired (I know how it feels 😉 ).  I wasn’t going to do it until Autumn, but if I do move I want my house looking top-notch for viewings, so decided to crack on and have it done now.  Obviously I haven’t been up a ladder painting the ceilings, but there has still been a lot to do.  All the furniture had to be moved, everything covered over, the curtains and poles etc. .taken down, all the skirting boards masking taped, the knobs taken off the cupboard doors……..  And then when it was done, everything had to be washed and put back.  I’m flamin’ well knackered and every joint I possess, and some I didn’t even know existed, hurts.  I’m getting the carpet shampooed on Tuesday and then it should be finished and the house can get back to normal, hurrahhhh!

Bertie hates any kind of turmoil and has been super clingy all week.  He always sleeps in his own bed because we both prefer it, but at midnight last night I could hear him pitter patting across the wooden floor and he tentatively jumped on to the duvet, then sidled up to me for a cuddle.  He just wanted his Mum, so I let him sleep with me even though he woke at 5am wanting his tummy rubbed.  It’s now 5.30 in the afternoon but feels like midnight!

I can’t believe it’s August already.  Where the HELL has this year gone?!  The next 3 months are ridiculously busy and I thought I had all the time in the world to plan everything and now I haven’t and I’m panicking!  It’s my Dad’s 80th birthday next week and I haven’t even got him a card yet.  We have 1 trip to Newcastle for the results of his Sjogren’s Test (they found something but we don’t know what until we see the Neurologist), 1 trip to Sunderland as he needs a cataract operation, then 1 trip to Hexham at the end of August to see about his hip replacement.  In between all that there are loads of little jobs which need doing in the house and I haven’t touched the garden in weeks.

In September it’s my birthday, and I absolutely have to start putting together the new talk I’m giving to a Scottish camera club in November even if I don’t manage to finish it.  I also need to decide which new club I’m joining as they start back around 8th.  Then there is my exhibition which absolutely needs to be done – 10 images printed off and mounted, plus packing crates and bubble wrap to organize – and I am also entering the Masters of Print again this year so need my 3 printed entries for that.

October is nuts.  I will be in London for my exhibition, am speaking at a Camera Club and attending a wedding all in the space of 2 weeks.  How the hell my health and energy are going to cope I have no clue.  And in amongst everything I am still hopeful about the bungalow I went to view so may need to put my house on the market.  No pressure then 😉  Seriously, I need my head read to have agreed to all this!  It just happened one thing at a time though and before I knew it………..Armageddon.  If you don’t hear from me in November it’s because I’m in a coma.

Right, I must get some supper because my tummy is rumbling.  Soup, a crusty bread roll and Say Yes To The Dress – there are worse ways to spend an evening.




Weekly roundup

I do my bit for other people and hope I am both a good friend and a good daughter.  People rely on me because I’m dependable, practical, knowledgeable about ‘stuff’ and will help someone out if I feasibly can.   Because I am at home all day, they assume they can call on me whenever they need to.  They also assume I am free to go out to lunch, off on days out and generally have so much time on my hands I am sitting by the phone just waiting for them to call.  They tend to forget that I am sick and live alone with no-one to help me.  I spend a minimum of 17 hours of every day in bed so only have 7 usable hours each day in which to fit my entire life, I have severe energy restrictions and I struggle just to get dressed.

I do try to set boundaries, but enforcing them can be just as exhausting as caving in.  An elderly, sick friend is currently moving house and I have spent whole days helping him.  On top of that he goes to a cafe every Sunday morning and expects me to meet him for brunch, even though I might already have had lunch with him one day in the week.  He became so demanding this week that I had to remind him of my situation and that in the past month I’d actually spent more time with him than my own parents.  In addition, I had not had one single day to myself, where I sat in the garden with a book, for an entire YEAR.

I try to have 3 ‘holidays’ each year: Easter, my birthday in September and Christmas.  I never go anywhere as I can’t afford to plus there’s no-one to have the dog, but I am supposed to spend the time lounging around doing absolutely nothing, just like I would if I were on the beach in Greece.   It never fucking works.  I missed my Easter holiday this year because I had a virus, so I told my parents I was having a week off this week as the weather was due to be lovely.  I was so looking forward to just lying on my sunbed and snoozing for days.  It didn’t happen.

Monday I had to go into town as the battery in my watch died and Bertie’s repeat prescription needed picking up, so I called in to see my parents.  My Mum’s doorbell needing fixing (vital and couldn’t be left), a birthday present needed wrapping for their sponsor child in India (there was a deadline) and she wanted me to order some cropped trousers for her as she’d put on weight and none of her summer clothes fitted and being as though we were expecting 38C temperatures and if she’s hot her breathing gets worse I felt like I had to.

Tuesday I did manage some ‘me’ time, but it was physically demanding as it involved being down by the river to take some photos.  I was quite pleased with the results, though, as I’d wanted to capture a gull fishing for at least 3 years!

Wednesday I went to view the bungalow in the morning, then my cleaner was here in the afternoon and I have to tidy up before she arrives because the house often looks like I’ve been burgled.

Thursday I have my groceries delivered and they needed to be put away.  Then we had wicked thunder storms and torrential rain, so I was forced to lie in bed watching repeats of Escape To The Country.   Lightening hit near my parents’ house and their landline stopped working, so I had to go in and work out if it was their phone (in which case they needed a new one) or the line (in which case they needed an engineer).  It turned out the micro filter had blown so they needed a new one of those.

Friday was the only day I managed to sit in the garden, because on Saturday it peed down.  And of course every single afternoon, plus 3 mornings, I have to take Bertie out because his bladder doesn’t take a week off.  And I still have to make meals, and stack the dishwasher, and put the recycling out…………

Needless to say it hasn’t felt much like a holiday.  It never does.  I am just as knackered as I was at the start of the week and I genuinely don’t know what the answer is.


Sorrow & Appreciation

I am a different person to the me of my twenties.  Back then I had no clue I had hEDS or MCAS and absolutely no idea I was about to endure a decade of solitary confinement and lifelong imprisonment by M.E.  I worried about cellulite (!), putting on 3lbs and what the world thought of me.  I used to paint my toe nails, shave my armpits and nourish my skin with Astral moisturizer (still the best moisturizer around, even if you feel like you’re slathered in grease 😉 ).  I dreamt about who I would marry, if I’d have children or whether my career would take precedence.   Normal shit y’know?

I am now 51 and have been to hell and back.  Literally to hell and back.  With hindsight, I have no idea how I have endured some of the experiences I have lived through.  It has changed my soul.

When I was bedridden, I prayed to die.  Every day.  I wouldn’t let my dog suffer the way I suffered.  I don’t even have words to describe what having severe M.E. feels like.  It is pure bodily torture, every nano second of every day and on top of the physical suffering every single pleasure in life was denied me.  I couldn’t eat.  I absolutely couldn’t sleep.  I couldn’t watch TV.  I couldn’t stand sunshine.  I couldn’t chat with my friends.  I couldn’t read a book or listen to music.  I couldn’t sit upright.  I crawled to the loo and back.  I couldn’t shower and to this day have forgotten what moisturizer feels like.  I couldn’t clean my teeth – for 4 years.   I lost my boyfriend, my job, my car.  And when it all got too much and my body was wracked by grief at all I had lost I couldn’t even be held by my Mum because it was too physically painful.  I knew I’d never marry, or have children and the career I’d worked so hard for was gone forever.  I had nothing.  I was nothing.  I merely existing in a poisoned state of isolated suffering.

And then the sun came out.  Little glimpses at first.   Shafts of light through a heavy canopy of leaves.  But eventually I stumbled out of the dark woods and into the daylight.  Can you even begin to imagine what standing in a sunlit flower meadow, surrounded by butterflies and buzzing insects, feels like after 14  years of solitary confinement in a dark room?   Heaven isn’t some place in the sky.  It’s here, it’s now.  We’re surrounded by it and don’t even see it.


One of the things people say when they meet me for the first time is that I seem happy, despite my health problems.  That’s because I am.  I see the world differently to them.  I went to bed last night with yet another migraine, feeling sick to my stomach and with killer back and hip pain.  I woke this morning and my migraine has gone and, for now at least, my back and hips at least aren’t screaming at me.  And within the first 30 seconds of opening my eyes I was grateful.  Hugely, joyously, grateful.  Then Bertie got on the bed, with his still-young eyes and cute Schnauzer mouth, and as I cuddled his warm, furry body and he licked my sweaty armpit I laughed out loud.  He makes me laugh every day of his life.  I had a brew and it tasted fabulous.  I put the telly on and revelled in the company it gave me.

I don’t ever dwell on everything illness has taken from me.  The grief of that would be my undoing and the pain too much to bare.  Just writing that sentence brought tears to my eyes as long-repressed emotions surfaced.  I have to swallow them back down.  I have to choose, instead, to focus on all I have.  Every nano second of every day is still a struggle but at least now I have a life and it is beyond precious.

This post was inspried by severe M.E. sufferer Naomi Wittington.  We don’t personally know each other, but we have friends in common and one such friend this morning posted on Facebook a blog post Naomi had written.  She writes with such eloquence and truth I wanted to share her world with you.  If nothing else I hope it makes you appreciate what you have just that little bit more.  And if you’re in the darkness I hope it makes you feel heard and less alone.

Courage or Stupidity?

I moved to my current home 15 years ago.  I grew up in the countryside but my parents moved us into town for work reasons when I was 13 and I hated every second – I’m a country bumpkin through and through.  However, it took me until I was 36 to manage to move back into a village as country homes are more expensive than town.  I love it here.  I love my little cottage, I love (some) of my neighbours, it’s the perfect 12 minute drive to my parents’ house and I am surrounded by stunning countryside.

Having said all that, since I move here the farm next door has tripled in size and the noise which comes from it is like Chinese water torture.  In particular, they milk the cows at 5.15am, at which point their dogs start barking their heads off and wake me up.  Every single day of the year.  If I don’t want that to happen I have to sleep with my windows shut, which is fine in winter but yesterday it was 26C and without the windows open I could barely breathe (bearing in mind I’m approaching menopause and am often roasting to start with).  The traffic noise is also really bad.  My ‘nice’ neighbours plus the owner of a workshop have a right of way over the drive to my home.  Three years ago a new tenant moved into the workshops and has caused me nothing but strife since.  He lets his customers park in my drive, which means I am blocked in and can’t get my car in and out of my garage.   Being reasonable didn’t work, so after 3 years I had to threaten him with an injunction to stop him, but his customers all moan at me and think I’m being unreasonable and a bitch to not let my drive be used as a public car park.   I also wasn’t a photographer when I moved here and I have outgrown my 8ft x 13ft spare bedroom which I use as a studio – I’d love more space.

So, this week I went to view another house.  As I am now in my fifties I want this to be my forever home and bearing in mind my health problems, which will only worsen as I approach old age, I would love a bungalow (ie single story home), so that if I ever need a wheelchair everything would be accessible.  The problem with that is bungalows are at least £70,000 more expensive than houses as they take up bigger plots, so in order to get one it would be in terrible condition and need renovating.

The house I went to view was perfect.  In a tiny, quiet hamlet 20 minutes from my parents’ which is still a do-able distance (the further out of town you are, the less expensive the houses), detached with lovely countryside views from the back, a double garage for both my car and mobility scooter, a bedroom which overlooks fields (as I spend so much time in bed I wanted a view), a private south facing garden and, icing on the cake, a large annex room which I could use as a studio.

This would be the view from my bed!

However, it is fucked!  It was lived in by an elderly lady, who went into residential care 2 years ago so the bungalow has stood empty.  There is mould growing round the windows, bright orange 1970s kitchen units, an olive green corner bath with 1970s wood cladding, cracked ceilings, dodgy heating and the floors are weirdly uneven so there is obviously an issue.  It would take a good year, or maybe more, to make it nice during which time I would live in filthy chaos.

So, the dilemma is: staying put in my cosy tiny noisy home forever and being miserable, or take the plunge and move while I’m still young enough to cope.  What would living in a shit-hole of a house for a year, and all the massive stress and upheaval of a renovation, do to my health?   Am I risking a relapse of my ME or a huge exacerbation of my MCAS?  Possibly.  But the alternative is to live in fear and not move on to something which could, eventually, be fantastic.

Whatever will be, will be.  My offer on the bungalow might not be accepted, I might not sell my cottage, but I have to try.  I have to have the courage to move forward and not just play it safe.  Wish me luck.




There is a fascinating discussion taking place on Jen Brea’s facebook page about how many people with a confirmed diagnosis of hEDS (hypermobile Ehlers-Danlos Syndrome) also have a confirmed diagnosis of M.E. (aka ME/CFS) as defined by the International Consensus Criteria.  There is a poll and so far it stands at 91% of hEDS people who have also been diagnosed with M.E. (as per the ICC).  As one commentator rightly pointed out there is likely to be bias, as people with M.E. follow Jen and people without M.E. don’t, but even so it’s a high percentage.

Reading the comments, I was amazed to see that patients were confused about how you differentiate between M.E. and hEDS, and that some doctors had taken away their M.E. diagnosis when they were also diagnosed with hEDS.  WTF?!  While it’s true they do share some symptoms,  they also have very separate and distinct diagnostic criteria and as someone who has both it’s easy peasy lemon squeezy to differentiate between the two.  However, to avoid confusion I thought I’d look at the overlaps and the differences.  I will be using the 2017 International Nosology for hEDS and the International Consensus Criteria  for M.E.


When it came to looking at the common diagnostic criteria for hEDS and M.E., you will probably be as astonished as I was that they only share 1 common symptom:

  • Chronic pain

That is it!

However, when it comes to hEDS there are symptoms which are reportedly common in the patients population but which don’t form part of the diagnostic criteria because they haven’t been definitively linked to causation.  These should be taken into account when diagnosing hEDS in conjunction with the official diagnostic criteria.  More of these symptoms are shared with M.E. including:

  • Autonomic dysfunction
  • Dysautonomia/POTS/orthostatic intolerance
  • Gastrointestinal symptoms, eg nausea, IBS, pain, dysmotility (constipation/diarrhoea), early satiety (ie feeling full quickly)
  • Allergies/hypersensitivities to chemicals, odours, environmental triggers, foods (ie MCAS!)
  • Headaches/migraine disorder
  • Impaired proprioception (ie being clumsy)
  • Genitourinary issues (ie weeing a lot, pain on urination, painful periods/endometriosis)



hEDs requires:

  • joint hypermobility

Plus 5 of the following:

  • Unusually soft or velvety skin.
  • Mild skin hyperextensibility.
  • Unexplained striae such as striae distensae or rubrae at the back, groins, thighs, breasts and/or abdomen in adolescents, men or prepubertal women without a history of significant gain or loss of body fat or weight
  • Bilateral piezogenic papules of the heel.
  • Recurrent or multiple abdominal hernia(s) (e.g., umbilical, inguinal, crural)
  • Atrophic scarring involving at least two sites and without the formation of truly papyraceous and/or hemosideric scars as seen in classical EDS.
  • Pelvic floor, rectal, and/or uterine prolapse in children, men or nulliparous women without a history of morbid obesity or other known predisposing medical condition
  • Dental crowding and high or narrow palate.
  • Arachnodactyly, as defined in one or more of the following: (i) positive wrist sign (Steinberg sign) on both sides; (ii) positive thumb sign (Walker sign) on both sides
  • Arm span‐to‐height ≥1.05
  • Mitral valve prolapse (MVP) mild or greater based on strict echocardiographic criteria.
  • Aortic root dilatation with Z‐score > +2


  • A positive family history of EDS
  • Dislocations or frank joint instability


  • Absence of unusual skin fragility
  • Exclusion of other heritable and acquired connective tissue disorder
  • Exclusion of other heritable and acquired connective tissue disorder and diseases which could account for the above symptoms.

None of the above form part of the diagnostic criteria for M.E.

M.E. requires

  • Post-exertional neuroimmune exhaustion characterised by:
    – Marked, rapid physical and/or cognitive fatigability in response to exertion which is debilitating and causes a relapse.
    – Postexertional exhaustion which may be delayed by hours or days.
    – A prolonged recovery period, typically 24 hours or more.  A relapse can last days, weeks or longer.
    – A substantial reduction in pre-illness activity level, by at least 50% (which tends to be forgotten and is why I query anyone having an M.E. diagnosis if they still work full-time).

Plus the following:

  • Neuro-cognitive impairments which become worse with activity.  These include:
    – confusion, disorientation, speech problem, new-onset dyslexia, cognitive overload.
    – short term memory loss.
  • Unrefreshing sleep & disturbed sleep patterns, eg. insomnia or hypersomnia (not due to pain or other symptoms).
  • Neurosensory and motor disturbances.  These include:
    – inability to focus vision/abnormal accommodation response of the pupils.
    – sensitivity to noise, light, vibration, touch.
    – muscle weakness, twitching, ataxia, abnormal gait/positive Romberg sign.
  • Chronic flu-like symptoms which worsen with activity, eg. sore throat, tender/swollen lymph glands, fevers/chills.  Also:
    – susceptibility to viral infections with prolonged recovery periods.
  • Energy transportation impairments, such as:
    – air hunger.
    – loss of thermostatic stability.

None of the above form part of the diagnostic criteria for hEDS.

Let’s also not forget that hEDS is a genetic condition present from birth.  ME, on the other hand, is an aquired disease usually following an acute viral infection.


When you look at the situation in black and white I’m amazed there is so much confusion in respect to telling M.E and hEDS apart, because they only share 1 diagnostic criteria, chronic pain.   While there are several symptoms like POTS, allergies and gastro-intestinal symptoms which may appear in both diseases, when combined with the official diagnostic criteria it’s very easy to see how distinct and separate the illnesses are.

As someone who has both diseases, plus MCAS, endometriosis, severe migraine disorder and dysautonomia, I find it fairly easy to tell which symptom is coming from which disease.  I get chronic fatigue from my hEDS, but it’s nothing like the flu-like malaise and drained, sickened, unable-to-move-without-feeling-like-I’m-dying  collapse I get with M.E.  The pain from my Endo is nothing like the pain from my hEDS, which is nothing like my migraine pain, which is nothing like the tooth-ache all over gnawing pain of my M.E.

Having said all that, my gastro-intestinal symptoms could be due to anything (migraine makes me nauseous, pain makes me nauseous, MCAS makes me nauseous, orthostatic intolerance makes me nauseous, exhaustion makes me nauseous) so there are definitely overlaps, but nothing which muddies the diagnostic waters.

That’s all I can manage to write for now.  I went on a photography day out yesterday and, despite sleeping 7 straight hours, today I feel like a rag doll – my eyes are down by my knees, I have a sore throat, my dylexia is off the charts, I feel sick, I’m hot, I’m very pale, I’m a bit dizzy and disorientated, I have a headache, I’m ridiculous sleepy, but most importantly my brain function is dreadful.  All this is the classic, delayed PEM of M.E.  I also have quite bad leg, neck and back pain due to hEDS, but it’s my ME symptoms that are keeping me in my pyjamas for the entire day (and probably all of tomorrow too, without the energy for a shower despite the fact I know I smell!).