That darned F word

Arrrrgghhhhhhh!!!!!  I’m glad I’ve got that out of my system because the current trend of confusing “chronic fatigue” with M.E. (I’m not using the term ME/CFS because I don’t have CFS) makes me want to scream.

A man wrote a post on the M.E. Association’s Facebook page this week saying that for the last month he’d been getting up at 7am, going to the gym to lift weights, having a steam session, then going back in the gym to lift more weights and do some cardio and was feeling much better.  There was understandably outrage in the comments section.  For a start most people with M.E. struggle to surface out of bed before 10am and any kind of extreme heat, like you’d find in a sauna, would floor them.  Our muscles do not function correctly and lifting my toothbrush can be beyond me some days – lifting weights on a regular basis would be absolutely and utterly out of the question.   Whoever diagnosed this person with M.E. needs to be sacked.

Ehlers-Danlos syndrome can cause significant fatigue, but that doesn’t mean you also have M.E.  That’s because M.E. has nothing to do with being tired, and lots to do with being ill, following trivial activity.  And by trivial I don’t mean a session at the physio (I wish).  I mean having a shower or getting dressed.

When you get the flu (the proper flu, not man-flu or a cold) you lie in bed with every muscle aching and feeling like cement.  Your brain pounds with cotton-wool fog, light and sounds are too bright and too loud, your throat is swollen and sore and walking 10 steps to the bathroom is like tackling the north face of Everest, after which you collapse back into bed feeling like you’ve been battered by a hammer-wielding maniac.  That is what M.E. feels like………..every second, of every day, of every week, of every month, of every year.  If you can call it ‘fatigue’ at all it’s an immune-induced ‘fatigue’ that is crushing and stops you doing the normal tasks of daily living every day.  It is not tiredness after activity, it’s feeling flu-like with associated all-emcompassing heavy exhaustion beyond most people’s understanding of ‘tired’.  And, more importantly, it is not relieved by rest.  So, after I’ve done something I shouldn’t – like a little bit of gardening – I wake the next day feeling poleaxed.  I spend the day resting in a foggy, poisoned stupor and wake the next day even more poisoned, exhausted, achy and foggy than I did the day before.  Each person with M.E. is different, but for me my symptoms peak 48 hours after the activity and finally abate after about 4 days (by which time I’ve done some other task of daily living and the cycle starts all over again).  And many forget that mental over-activity brings on the same symptoms.  If I’m on the computer for too long I start to get a sore throat, feel dizzy, nauseous and generally feel fluey and unwell.

The cardinal feature of M.E., I am sick of saying, is “post-exertional MALAISE”.  I’m not even sure ‘fatigue’ is mentioned in most of the diagnostic criteria.

The problem arose when M.E. was re-branded as Chronic Fatigue Syndrome.  This became confused with Chronic Fatigue which is a symptom suffered by millions of people with a hundred different diseases from insomnia to cancer, and the general population on a Friday afternoon!  IMHO, ‘hypermobility’, ‘hypermobility spectrum disorder’ and ‘Ehlers-Danlos Syndrome’ suffer in a similar way.  People with generalized hypermobility query whether they have HSD or EDS, people with HSD query whether they have EDS (some do, just like some people with CFS have M.E., but then equally some don’t) and EDS becomes a diagnosis that few qualify for even if they have it, just like true M.E.  It’s all such a bloody mess.

“Who cares?” I hear some of you say, “it doesn’t matter what you’re diagnosed with as long as you are diagnosed and get treatment”.  But actually, it matters a great deal and here is why:

  • If you are diagnosed with M.E. when your fatigue is down to another reason, such as Lyme or Lupus, you won’t receive the treatment you need for the actual disease you have.  There is no treatment for M.E., so other than being offered some CBT to adjust to living with a chronic illness you will be left to rot.  That is not good if you have fatigue which could be treated.
  • If, like me, you are unlucky enough to have both M.E and hEDS you sadly will not be able to tolerate the physiotherapy exercises needed to treat your hEDS.  If I hadn’t had my M.E. diagnosis I would have pushed myself to do the hydro and physio recommended for my hEDS and made myself sick as a dog – possibly even causing a permanent relapse from which I never recovered.  If, however, you have simple ‘chronic fatigue’ doing the recommended physio for hEDS might help – at the very least it wouldn’t lead to a deterioration in the condition.  Being correctly diagnosed is vitally important.
  • Any research carried out on an incorrectly diagnosed population is pointless.  If research on M.E. includes people who actually have simple ‘chronic fatigue’ and they get better by lifting weights, then all people with M.E. will be deemed to be ‘curable’ by lifting weights, when actually lifting weights would be hugely damaging.  Similarly with hEDS, if under the new criteria someone like me is classed as having HSD when I actually do have hEDS I will skew any research into HSD because I don’t in fact have it.  And research into hEDS will only include the most severely affected which skews research into hEDS too.  I didn’t start dislocating my joints until I was in my forties, so I wouldn’t have qualified for a hEDS diagnosis when I was younger despite having non-joint-related symptoms from childhood.

There is an alarming trend in the M.E. world for researchers to be studying ‘fatigue’ and energy production when the fatigue of M.E. is a by-product of immune dysfunction, just like it is when you get the flu.  The fatigue experienced when you have flu is just a symptom of the disease, not the cause.  It all feels like a huge waste of time and resources and will lead to yet more blind alleys (remember I’ve been following research into M.E. for 20 years now).

The bottom line is we urgently and desperately need a test to distinguish M.E. from CFS and chronic fatigue, just as we urgently and desperately need a test to distinguish hEDs from HSD and generalized hypermobility.  I know clinicians have tried their best to differentiate these diseases using symptoms as a guide but it doesn’t work, particularly in hEDS where symptoms can appear or increase as you age.

And speaking of age, there has not been one single study to my knowledge on older people with M.E. or older people with hEDS.  Research always tends to focus on children and young adults for reasons I can’t work out.  We desperately need studies on the effects of long-term M.E. on the over 50s, and we absolutely need this age group studied in hEDS as it is not uncommon for symptoms to suddenly appear or increase when you hit forty particularly in women. Even a simple survey on the over 40s undertaken by the EDS charities would be better than nothing.

Whichever bright spark decided 20 years ago to rebrand M.E. as CFS has a lot to answer for and if I could get my hands on them I wouldn’t be responsible for my actions.  And in 20 years time I may feel the same way about the current clinicians who rebranded hEDS and HSD!

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5 thoughts on “That darned F word

  1. Jan Groh

    I can only imagine how frustrating it is to have to explain that over and over. I think there’s some kind of mental block in people’s heads to the term “chronic fatigue” just like there is to “hypermobility” – it’s immediately downgraded to something incidental, when in point of fact, it can be quite disabling for whatever reason.

    I was misdiagnosed with “CFIDS” as it was called here in the US back in 1993, but knew after just one support group meeting I didn’t belong. As you said, those people could barely crawl out of bed, where as I would be down for a day or two, but would eventually recover and pick back up. I could exercise and exert a fair amount – even a lot sometimes, and not collapse from it, though I pooped out and was in more pain than anyone I knew from what we now know to be hEDS (pre-2017).

    As for HSD vs hEDs though, I’ve taken the plunge into the H-HSD category waters, and don’t mind. Here’s why: they know very well there is probably a good number of us who don’t meet the new tightened hEDS criteria, but who may well share the molecule. That’s okay, by tightening the phenotype: it’ll speed up the research as those folks will have more in common. (How anyone remains at all bendy after 50 I’ll never know! I’m so stiff and kyphosing to badly I already look a little like an old lady from the side – hunched over – just with the best skin you ever saw, lol!)

    Anyway, I’ve also been able to help many more MCAD patients in my regional support group start to suspect HSD vs hEDS since the new category came out, as they all felt strongly they weren’t “bendy enough” or severe enough for EDS, so resisted my coaxing to look into it before. Now, they’re actually sniffing around the edges of the HSD pool and one or two have even dipped a toe in and agree it’s a likely possibility now. Refreshing change! (If I had a nickel for every masto patient who thought it caused bursitis, tedninitis or loose patellas I’d be rich.)

    Do we need more research on all of this? YES! Of course. Always will. But at the rate genome sequencing is advancing along with bioinformatics, I’m confident that in 5 to 10 years tops we can all get WGS and finger a couple (or more) common SNPs. Or many more will, anyway. I think our DNA is so vast, that we’ll be hard pressed to say exactly what combo of clear pathological SNPs plus secondary defects like MTHFR and CYP3a5 etc. – which I consider “amplifiers” – along with secondary illnesses (Lyme, autoimmune disease and more) causes “hEDS” or what passes for it currently. Never mind all the effects of epigenetics. (And how come no one talks about faulty RNA? Or have I missed something? Even if the original is “clean”, what about our RNA? if it’s not translating correctly you’d have a problem too no?)

    Never mind additional separate or secondary mitochondrial disease and disorders. So many rabbitholes, so little time. Thanks for continuing to clarify the proper terminology around CFS and ME. I will now be distinct about using ME only to describe the very sickest of people (I know of a couple of you, the rest of us just have “CFS” secondary to EDS/MCAD/POTS as you know). That’s why I called my blog “Oh TWIST”, as in, “Oh, That’s Why I’m So Tired!” It wasn’t ME as they first thought, not in me anyway. But it is for some of you poor folks. I even wrote a post about it last year here: http://ohtwist.com/2015/03/14/fatigue-and-eds/

    I’ll have to update it a touch with my newly clarified understanding, thank you.

    Jan

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  2. Jan Groh

    I forgot to add, I think of the HSD category much like how we “reclassified” Pluto to a “dwarf planet” back in 2006… it’s still Pluto! It didn’t change a spot or reverse it’s orbit or stop spinning for heaven’s sake! I care less how they want to classify me, so long as they respect me and treat me properly.

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  3. Joan

    Great blog Jak. I am 52 and am baffled at the fact that there is absolutely no info or research on the over 50’s with heds. My symptoms like yours multiplied by 100% once I hit 40. I have had ME from about 30 and like you am more house than bed bound nowadays unless my husband is with me to make sure I stay in one piece when I am out and about. I also have a theory that hormonal changes around peri and full menopause have a serious effect on both ME and eds but again no research to be found anywhere online or at least I can’t seem to find it. Joan x

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    1. Jak Post author

      I couldn’t agree more about hormones Joan. Why oh why has no-one looked at this yet?! I now realize my Mast Cell Disease began in puberty and then was fairly quiet until I started peri-menopause when it went nuts. My EDS-related back pain started at age 11, just as my periods started and like you my EDS went to hell in a hand-cart when I reached my early forties. I feel the EDS charities could do a lot more to understand hormones and EDS symptoms. Jak x

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