Tag Archives: chronic fatigue syndrome

Research trends

I’ve mentioned recently my frustration at the current research trend in the M.E. world to focus on energy production when, as a sufferer, I know that the ‘fatigue’ (for want of a better term) I experience is merely a symptom of immune activation not the root cause of my disease. Researchers have been studying energy production, in particular the mitochondria, as a cause for M.E. for over 20 years now and still haven’t found anything, which leads me to conclude there is nothing to find.  I’m not suggesting that mitochondrial dysfunction isn’t part of the disease picture but it’s definitely not the cause.  I wish these people would talk to patients more, especially we old timers who’ve lived with the illness for decades!

I’m equally unconvinced by the current trend to put every ailment known to man down to gut issues (SIBO, flora, bacteria etc) – it just feels like the current ‘hot new thing’ in a very long line of ‘hot new things’ on which to pin disease.  My Dad excitedly kept an article out of his newspaper for me this week which touted “answer to chronic fatigue syndrome found in the gut” and, much as I love him, I just sighed.  Here’s the thing: most cases of M.E. start with some kind of viral or toxic event (OP poisoning, vaccinations) but the event is different in all of us – mine was a tummy bug, yours might have been glandular fever, someone else’s a Hep B vaccine.   If we’d all started with a tummy bug then I’d be much more open to the disturbed gut theory, but we didn’t.  The one thing we share is immune activation, so for me the answer has to lie in the immune system and in particular its response to viral or toxic trauma.  As I’ve said before, if researchers studied why people with the flu are so weak and exhausted they can barely get out of bed they’d go a long way to finding out the cause of M.E.  In fact, it gobsmacks me that no-one has looked at that before now!

No offence to my American friends, but there is a mould trend going on in the States with everyone convinced that mould is the root cause of their issues and it makes me want to chuckle.  Northern England is wet for 10 (sometimes 12) months of the year, humid in summer, we mostly live in houses which are at least 100 years old and inherently damp, so I’m sure mould is everywhere.  We couldn’t escape it if we tried.  Yet not every Brit you meet is sick and we don’t have a larger M.E. population than any other country as far as I’m aware.  Obviously rampant mould growth, where you have black stuff growing on your ceiling, is hazardous to health and must be dealt with but other than that we in the UK don’t give mould a second’s thought – it’s been around a lot longer than we have and as a species we’ve managed to survive.

I’m just as cynical about the current inflammatory trend.  Inflammation, it seems, is everywhere and is causing total havoc.  Only of course it’s almost impossible to measure inflammation or to say, if inflammation is present, why it’s there and whether it’s a good thing or a bad thing.  When we cut ourselves the wound is immediately inflamed which is a painful, but absolutely necessary, part of our body’s response and vital for healing.  And before anyone comments, yes I know there’s a difference between acute and chronic inflammation but who’s to say chronic inflammation isn’t just as protective as acute?  It’s got to be there for a reason and we’d do better to find out why our bodies are enlisting our inflammatory response, rather than blaming the inflammation itself.

Going off-topic slightly, the trend of foods purportedly giving you every disease from cancer to Alzheimer’s drives me insane.  We have no idea what causes Cancer and even less idea what causes dementia, so for anyone to say “burnt sausages give you cancer” or “broccoli reduces your risk of Alzheimer’s” is absolutely absurd and makes me furious.  In fact, I’d go as far as to say researchers who tout this nonsense should be prosecuted.  The same goes for anti-inflammatory foods.  If we have no accurate way of measuring inflammation, how do we know what foods affect it?!

There have been articles in the newspaper this year saying “exercise staves off dementia” and “lack of sleep increases risk of dementia” and I think “what a crock of shit!”  My Dad, who is 78, still walks 8 miles a week up a mountain and, as a former marathon runner, has exercised vigorously his entire life.   He’s never had insomnia and sleeps 9-10 hours a night without a problem, yet has dementia.  My Mum, on the other hand, hasn’t exercised since she was a child and wakes at least twice a night every night, yet she is totally mentally on the ball (when she’s not drunk!).  All these articles do is play on people’s emotions.  We don’t have a clue what causes Cancer or Alzheimer’s and that lack of control scares us, so we focus on what we eat or how much we exercise because those are two things we can control and it makes us feel better.

I’m no psychologist, but much of the information currently touted as being bad for our health, or good for our health, is environmental – sleep, exercise, food and living conditions.  In other words, all things we can control.  We’re extremely fearful of the fact that Alzheimer’s or Cancer might be viral, bacterial, or genetic, or even worse some novel new thing we as yet know nothing about, and therefore outside of our control.  We’re fairly arrogant us humans and think that we have power over our bodies, when in fact life is mostly just random and shit simply happens.  If keeping mentally alert staves off Alzheimer’s how come author Terry Prachett developed it in his 50s?  If the phytoestrogens found in soya stave off breast cancer how come soy munching vegetarian Linda McCartney died from the disease?  How come my Mum, a lifelong smoker, couch potato and current alcoholic, is nearly 80 and has never had cancer and her non-smoking, tea-total, bike riding sister died from it?  None of it makes sense and that’s the very thing that scares us the most.

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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!

It’s not fatigue!

I know I said my next blog post would be on food, but after reading some research published today on Chronic Fatigue Syndrome the food post will have to wait.

I saw an exciting headline which said “ME is real.  Scientists have discovered specific blood chemicals in CFS patients which are similar to those seen in hibernating animals.”  Big sigh.  In fact, huge sigh.  Since when did hibernating animals feel ill?  Maybe this is just the Daily Mail’s take on the research, but if so it’s replicated by the broadsheets, eg The Telegraph.

The cardinal feature of M.E. is post exertional malaise (PEM), ie feeling ill and fluey after exertion, either mental or physical – very trivial exertion like cleaning your teeth.  When did this number no.1 diagnostic criteria disappear?  When did the no.1 diagnostic criteria become chronic fatigue, which btw is a symptom not a disease and common to many illnesses, eg. depression, cancers, hormone disorders, heart disease, Ehlers-Danlos Syndrome to name but a few.

When did symptoms of immune activation, like sore throats and tender lymph glands, disappear from the diagnostic criteria?  When did central nervous system symptoms like dysautonomia disappear from the diagnostic criteria?  Why does no-one ever talk about paralysis, or a-typical seizures or new onset dyslexia?  Or horrendous muscle twitching, peripheral neuropathy, speech problems, light, sound and touch sensitivity?  Or drug intolerance (or in my case complete allergy) and alcohol intolerance?  When did the number one symptom for ME become persistent fatigue and nothing else?

What happened to starting ME with a virus or vaccination (ie an immune event) which you simply never get over?  What happened to having to rule out primary mental health issues like depression and anxiety before a diagnosis of ME can be made?

This is what happens when you call Myalgic Encephalomyelitis Chronic Fatigue Syndrome.  This is what happens when you water down the diagnostic criteria and include just about anyone with chronic fatigue as a symptom.  You end up with the focus on fatigue and nothing else.

I was told by doctors that I was so ill I might not make it through the night.  Twice.  You don’t die from “fatigue”.  You are not bedridden, have seizures or become paralysed by “fatigue”.  You do not lose your speech or your mental faculties because you are persistently tired.  I was not in “hibernation” for 10 years.  I was near death for 10 years, every second of every minute of every day.  And FWIW I couldn’t sleep a bloody wink.

I haven’t read the actual research paper as I don’t have the brain power.  I read on the ME Association’s Facebook page, however, that it’s very exciting research and could be potentially important.  But the newspapers still focus on the F word and, let’s face it, the public are going to read the newspaper reports not the actual research.  And they’re going to take away from it that we are all cute little hedgehogs, sleeping our days away!  I wish.

When am I going to read a newspaper report that tells ME like it really is?  That doesn’t even mention depression.  That doesn’t drag up the ‘Yuppie Flu’ reference?  That doesn’t tell me changing my diet, joining a gym or taking an expensive supplement will cure me?  Because when that day comes I’ll celebrate and not until.

 

 

Why aren’t they listening?!

I had an appointment with Professor Julia Newton at the Falls & Syncope Clinic in Newcastle-upon-Tyne last June as I was having some really scary trippy heartbeats and also wanted to be assessed for Dysautonomia/POTS (you can read about the appointment here).  She ordered some further tests to be carried out which were done at the beginning of September, then I heard diddly squat.  Zilch.  Zero.  After chasing up the appointment twice, this morning (7 months after my initial appointment) I finally received a letter from Prof Newton basically saying all the tests were fine and no POTS is indicated.  No explanation is given for my symptoms, however, so as usual I’m left totally in the dark as to what is happening.  I long ago stopped getting frustrated by these things.  Finding a Doctor who is actually interested or helpful over the past twenty years has been so rare I can count them on one hand, and two of them were my GPs!

The thing that pisses me off the most, however, is that Prof Newton runs an internationally acclaimed research facility for people with M.E. and I am the only adult I know in the entire country who had very severe M.E. for nearly a decade yet has made a substantial recovery.  I also had an almost total remission literally overnight following vaccinations (although they later went on to nearly kill me) and just before I come down with any bug (such as a cold) I feel absolutely brilliant – both events which I think are highly significant.  I’m at a loss as to why I can’t find a single researcher or Doctor who is interested in my case.

In 1994 a ground-breaking UK research initiative called the Case History Research on ME was launched (a summary of which can be found here).  It’s purpose was to follow severely affected patients over a 10 year period to see how their ME progressed.  I took part for the duration of the study, yet have no idea how the information was used.

The ME Association several years ago launched an initiative to have an ME biobank of blood and tissue samples, and CHROME participants were supposed to be the first people recruited as they had strictly defined ME (as against the now umbrella disease CFS).  I’ve never once been approached to take part in the biobank, despite being a long-standing member of the ME Association, and have no idea if the blood bank is even up and running (I know the tissue bank is still in the fundraising stage).

Stephen Todryk is conducting a 16 month study into immune responses in ME/CFS and because of my reaction to vaccinations (which provoke an immune response) and viruses (which again provoke an immune response) I approached him to take part.  He did me the courtesy of replying saying he was interested in having me as a study subject and requested that at my next appt with Prof Newton I needed to have my blood taken which should then be forwarded to him.  Only I’m not having a second appt with Prof Newton am I?!  So that’s that *sigh*.

Dr Ian Lipkin is another internationally acclaimed ME researcher who is currently looking at gut-related immunity specifically in terms of viruses and bacteria.  I emailed him with a brief outline of my history and a link to my Canary post which is a hypothesis on mast cell activation in ME.  I didn’t even get a response, so have no idea if he ever read my article or what his thoughts were on it.  What is clear is that he’s obviously not interested in studying me for his research despite the fact that my ME started with a stomach bug and has improved following a mast cell treatment protocol.

Research into ME is fundamentally flawed because studies invariably exclude severely affected patients as they are too ill to travel to the research facility or to have scans etc performed.  So researchers end up only studying mild or moderately affected patients, which is a bit like studying heart disease and only looking at people with chest pain of various causes (eg acid reflux) and not those who actually have heart disease and need a triple bypass.

Not to blow my own sick trumpet but I think I’d make a good research candidate because:

  • Although I used to be severely affected, I no longer am so I’m able to travel to wherever they want me to for study.
  • I have made a substantial recovery, after being so ill on two occasions my parents were told I might not make it through the night.
  • I have an immune response to vaccinations and viruses which brings almost instant remission of symptoms (I just can’t sustain it!).
  • I have improved on a protocol which alters immune function (ie dampening down histamine/mast cell response).
  • Because of my almost total drug allergies, the only drug I’m on is an acid suppressant which shouldn’t skew research findings in any way (plus I can stop taking it for a week or so if needed).
  • I’m a non smoker.
  • I’m tea-total.
  • I have a very clean diet.
  • I live in a rural clean-air environment (all of which means I’m not ‘contaminated’ by external factors).

I’m not sure what else they could want!  Yet, as usual, researchers will carry on studying the mildly affected and not the severely affected, particularly anyone who has recovered.  Then we wonder why, in the sixty years since the wonderful Melvin Ramsey first described ME in medical literature, we’re still no further forward in finding a cause or effective treatment.

 

 

 

Chronic Fatigue & M.E.

M.E. is one of the most abused diagnoses of the last Century and the disease is definitely the most misunderstood, neglected and fought-over of our time.  For many years I’ve avoided the politics of M.E. because of any topic it’s the one that can make my blood boil in a nano-second and the stress isn’t good for my health.  Having said all that, it’s still worthy of a post (but I’m not going to make a habit of it).

The reason it’s worth a post is that many of the people I’ve come across over the years with a variety of other diseases, eg. Ehlers-Danlos, Lyme, Lupus, Sjogrens, Coeliac and many others, were initially diagnosed with Chronic Fatigue Syndrome before the real cause for their fatigue was found and their diagnosis was changed.  Over recent years M.E. has been reclassified as CFS and the diagnostic criteria watered down to such an extent that anyone with unexplained chronic fatigue whose standard blood tests come back normal is labelled as having CFS.  It’s wrong on so many levels.

When I was first diagnosed with M.E. in 1994 I’d barely heard of it (there was no internet then so access to information was much more local and limited).  I was just extremely fortunate that my GP was the one Doctor in the practice clued up on the disease, which was as rare as hen’s teeth back then.  As I had an obvious viral onset she first diagnosed me with post viral fatigue syndrome, and when I hadn’t recovered after 6 months this was changed to M.E.  I had all sorts of investigations and blood tests which were all clear, and my symptoms were classic M.E.

There have been several sets of diagnostic criteria over the years used to diagnose M.E., which I’m not going to go into – if you’re interested just Google them.  When I was diagnosed you had to have the following:

  • Viral onset of symptoms.
  • Post-exertional malaise.
  • Post-exertional fatigue, with delayed onset (often by 24-72 hours) which persisted for several days following activity and was unrelieved by rest.
  • Fatigue which curtailed the activities of normal life by at least 50%.
  • Unrefreshing sleep (understatement of the century!)
  • Cognitive dysfunction: ‘brain fog’, poor short-term memory, problems with information processing and problems with concentration.
  • There were also minor criteria which had to be present, such as new onset sleep disturbance, headaches, pain, nausea, paresthesia, sore throat, tender lymph glands, chronic flu-like symptoms, orthostatic intolerance and several others.
  • Symptoms had to have been present for at least 6 months and all other causes for the symptoms had to be excluded.

However, as I’ve previously stated, the past 18 years has seen the diagnostic criteria change and the illness re-branded as Chronic Fatigue Syndrome.  The cardinal feature of post-exertional malaise is now gone, and the emphasis is on fatigue.  Not the classic post-exertional and delayed onset fatigue of M.E., just chronic fatigue in general.  Diagnosis no longer excludes people with mental health issues and activities no longer need to be curtailed by 50%.  A woman in my village told me 2 years ago that she’d been diagnosed with M.E., yet she still works full-time and last year went on both a skiing holiday and walked the Great Wall of China.  Whoever diagnosed her needs the sack.

Under the new and broader diagnostic criteria with its emphasis solely on fatigue, 40% of people are diagnosed as having M.E. when they actually have another disease, such as Ehlers-Danlos or Lyme.  In being incorrectly diagnosed patients are missing out on treatments and management advice which might help the disease from which they’re actually suffering.

Another reason the diagnostic criteria is so important is that researchers will never get to the root cause of M.E., and ultimately find a cure or effective treatment, if they’re studying people who don’t have the disease to start with.

Chronic fatigue is not M.E..  The number one diagnostic marker for M.E. is post-exertional malaise  coupled with delayed fatigue and pain which lasts for several days after the event, no matter how much you rest.

No-one I know with strictly defined M.E. is in full-time employment, and the majority aren’t in employment at all.  They are all largely housebound and in many cases virtually bedbound.  Prognosis for full recovery in strictly defined M.E. has been estimated at about 7% and these are often children who are more likely to recover fully due to the fact their immune systems are still under-developed.  M.E. is a very serious disease, with profound impact on ability to function and often leading to substantial disability.  It can also kill, and M.E. has been cited as the official cause of death for several people here in the UK.

I’m vaguely aware that there has been a huge debate in recent years in the USA about changing the name of CFS to something else.  Patients here in the UK hate the name too, and reached a compromise with the medical establishment by calling it CFS/ME which neither side is happy with.  However, we’re focusing on the wrong issue.  It’s the diagnostic criteria which is the problem and the reason so many people are being mis-diagnosed.  We need to tighten the diagnosis back up to strictly defined M.E., and anyone else with unexplained chronic fatigue needs to be separated from this patient population.  You wouldn’t study and treat people with brain tumours in the same way you’d study and treat people with a headache, yet that’s exactly what’s happening to the M.E. population – and then we wonder why, in 20 years, we’re getting nowhere in finding out the cause or any effective treatments.

For a description of life with ME see this wonderful blog post written by a sufferer of many years.