Many thanks

Dear readers… I do believe we’ve just passed the £1000 fundraising target. Many thanks to you all. ME Research UK will be grateful. As, of course, are Muriel, Alister, Jenni, Hamish and Steve!

And a reminder that if you tried to donate via JustGiving it might not have worked correctly. If you are one of those kind folks can you check that your donation actually went through?

EDIT August 1st: Well, thankyou all very much! We’re now headed towards £2500 once we include UK Gift Aid.  Blimey!

On the home front…

Muriel:   Little did I know, when I last did a degree, that my newly honed writing skills would be put to use for patient advocacy rather than for educational research purposes!  I’m absolutely sure that’s not what the ESRC had in mind when they generously funded my further education but life doesn’t always turn out the way we planned it.  Letter writing is not possible for Ali as one of the cardinal symptoms of severe ME is cognitive dysfunction.  Ali refers to is as brain fog.  I describe it as not being able to hold onto one thought long enough to connect it to the next thought.   Either way, it’s a severe loss when one needs to fill in lengthy forms or write letters or answer neverending easily misinterpreded questions with potentially severe financial consequences.  What was that question again?!

So today my job has been to try to ask for the assistance of Ali’s MP (Member of Parliament in Westminster) and MSP (Member of the Scottish Parliament). Pay attention now as we lucky Scots have representation in not one but two parliaments!   I am not in the habit of contacting MPs/MSPs as I usually assume they have much better things to do than worry about our troubles but in this case I’ve made an exception and contacted not just one, but both of them.

For those of you who are not local, the UK has a welfare or social care system.  This means that those who, usually for reasons not of their own making, are unable to support themselves are entitled to a degree of support from the state for the duration of their ills.  Depending on your particular circumstances, this support is accessed by many and varied form fillings and evidence gathering exercises, face-to-face assessments and hopefully successful outcomes granted for a short period of time then reassessed (more forms, more face-to-face assessments – you get the picture?) to make sure that the benefits are adjusted to be somewhat adequate to an individual’s needs or withdrawn if no longer appropriate.   Apart from the 40 page forms to be filled in (for people with disabilities?!) what could possibly go wrong?

Enter the Conservative government and their penchant for ‘making the bankers happy’ at the expense of the ordinary folk (from Steve, Ry Cooder – No Banker Left Behind).  What follows?  Mayhem!  Much like the PACE trial we looked at yesterday, it is perfectly possible to enter the PIP (Personal Independence Payment) system at a particular award level (all carefully assessed, evidenced, etc) and be re-assessed 2 years later in much worse health but find that you have – according to the PIP reassessments – miraculously regained sufficient health/functioning to no longer qualify for the PIP benefit (or to be recovered in the case of the PACE trial).  Your PIP financial support is abruptly ended.  There then follows a comic farce in which various stages of reconsideration and appeal progress from one stage to the next over a very long period of time adding additional stress to your already difficult circumstances.  All the while, with new and interesting stages of ‘recovery’ interpreted liberally by the PIP assessors in order to continue to deny your claim – until eventually your case ends up before a court of law.  For a large number of PIP claimants this appears to be the first time they are able to put their case to people who are not trained in the PIP assessors’ new found art of denial of disability.

So what does this have to do with MPs/MSPs?  You might think that medical evidence, evidence from people who know you or care for you, specialists, psychologists, etc would form a picture to satisfy a disability benefit claim?  But no,  in the hands of a PIP assessor these are mere fodder for misinterpretation and gleaning of ‘turns of phrase’ to be twisted into evidence on which to base a denial of one’s claim.  So, in the end, one has to turn to one’s MP/MSP to ask for their support: people who don’t know you/have never met you and have a country to run.  And, if the disability support forums are anything to go by, this appears to be an often successful means of getting the PIP assessors to stop their lying and manipulative ways.  I would have thought that MPs/MSPs would have better things to do than sort out wide scale mismanagement of benefits systems, but I guess, thank heavens, they don’t!  Whether their PIP claimant support loads are now reaching such heights that they are inclined to put extreme effort into bringing about wholescale repair of a broken PIP system remains to be seen.  And whether their hoped-for interventions will make any difference to this debilitating process, for Ali, also remains to be seen!

And don’t forget that when this round of ‘trying to survive the system’ comes to whatever end it comes to it will be just in time to fill in the forms for the ESA renewals!  Never a moment to recover one’s health!  Anyone would think that increased stress was a well-known cure for whatever ails you?

And lest you think that any of this leaves me with any degree of satisfaction in an advocacy job done satisfactorily so far, think again.  One of the risks of being a parent to a child or young person with severe ME is that you can be accused of Munchousen Syndrome by Proxy because the words the various agencies see/hear are yours rather than the child/young person’s since they are too ill to engage with such a long and complicated (and nasty pit filled) process!  Here’s a link if you’ve not ever run the risk of being so accused – .  Being your child’s advocate is not for the faint hearted!

A new idea – one I’ve not seen before – about the cause of ME

Muriel:    Here’s a conveniently Plain English explanation of a new theory about ME (Dr Willy Erickson).  I’ve not heard this one before.  A link to the original journal article is also in this link below for those of you who understand in depth physiology, anatomy and biochemistry?!

It will be interesting to see if this idea gains ground or not….

The PACE trial

Muriel:  (nicknamed the PACE study) and initially touted as a way to produce ‘recovery’ for ME/CFS patients has come under increased scrutiny since its publication in 2011.

It was originally announced with considerable media hype, eg

But ME patients found it very hard to believe (given their own experience of exercise) and started asking questions

Just a few days ago the ME Association (UK) has arranged with SAGE Publishers to give Open Access to the various scholarly articles questioning/defending the PACE trial

Unfortunately, the ‘biopsychosocial model’ used in the PACE trial has become entrenched in the UK Welfare system making it very difficult for people disabled by this illness to receive the benefits they need to survive.

While much of the rest of the world has now moved toward disregarding this study for the methodologically poor quality which pervades it, here (in the UK) there seems to be a profound unwillingness on the part of both some sections of the research community and government/welfare communities to acknowledge that it was a deeply flawed study which should be retracted.  An apology to all those hurt by CBT/GET ‘treatment’ would also be useful.  A determined effort to remove these kinds of warped assumptions about poorly understood conditions, like ME/CFS, from the welfare system would also be  helpful.  Further, a complete revision of the advice given to GPs would be in order.

The ME community has been spoken of by the PACE researchers as an angry group of patients.  No wonder, when they’ve been the subject of such research/medical/welfare malpractices!

Huge thanks go to the many ME patients and research activists who put huge efforts into getting the data for this trial opened to scrutiny and then re-analysed and exposed for what it is.

Update on the weary peregrinos

Muriel:  Just spoke with the very weary peregrinos who are now on about Plan E, or was it Plan F or maybe even Plan G?!  The British Airways debacle has left them seriously short of time and in spite of VERY long days they have not been able to catch up enough so have resorted to something they had hoped to avoid at all costs….they got a bus at a cost of E5 each.  Sadly, the little villages they are travelling through have no internet so we’ll have to wait for one that does to get their updates.  In the meantime, they are well, utterly exhausted and looking forward to another snore-filled night…

Very l…o….n….g days

Muriel:  I spoke with the peregrinos this morning and they are all well and walking again after a memorable communal evening meal and breakfast with the ‘blessed’ bonus of a snore-free night.  It was their first night in a donativo (donation hostel).  They’ll no doubt tell you more when these very long days of walking ease up a little.  They are currently walking through industrial areas but the sun is shining, the locals are very generous and friendly, their packs are lighter and their spirits are good.  Please help our ME Research UK Charity to raise more money and get closer to that “breakthrough” we are all longing for by sharing this blog and/or tweets with your friends and family or maybe even your work colleagues.  Every donation helps!  Thank you so much.

Here, at home, our ME constrained lives have very different highs and lows.  A big high, for me, was enough energy to have lunch with a lifetime friend yesterday.  Delicious food, charming and friendly cafe (Comrie Croft Tea Garden ) and the always pleasure of a best pal made for a very special day for me.

Ali continues to regain his extremely limited strength at home.  He’s helped by the boundary pushing Herbie dog who is determined to make the other half of Ali’s double bed his own in spite of knowing full well that the house rules preclude such antics from a dog.  While we completely understand Herbie’s line of reasoning – cats are allowed on the bed, they are smaller and obviously less significant in the ‘family pack’ than he is, so where’s the problem?! – we know full well that if Herbie wins Ali will soon be pushed off one or other edge of the bed by Herbie’s expansion of territory behaviours.  To not be master of your own bed seems a step too far for a severe ME person!

An additional blessing in our day is that the sun is shining (yes, it does shine in Scotland!)  After a thrashing – from 3 of the 4 compass points at some or other point in the day – wind and rain storm yesterday, today has dawned with a largely clear blue sky.  Bliss!  I see a few whispy clouds creaping in over the Sma’ Glen but I’ll just ignore those and hope they go away!  If my energy looks good at any point in the day I might even get to plant out my bok choi, parsley and kohlrabi seedlings that have been ready to go out for weeks now.  Yes, I do eat my greens – as many and varied as I can find them!

Here’s hoping you have a wonder filled day too.

Where the pain comes from…

Muriel:   Here’s a report on new research which goes some way to explaining why many folk with ME hurt so much…  And why we may have so little energy – are we running on our ‘backup system’?

About ME/CFS

Muriel: ME is a tricky disease for a load of different reasons.  Based in my personal experience, here are just a few to conjure with…

When I was diagnosed (1989) by an ENT specialist in London he made the following statement:  “I’m telling you this because my GP wife has the same illness and I recognise the symptoms.  However, I’ll not write it on your medical records because this diagnosis won’t do you any favours as most medics think it is a form of malingering.  I know it’s not malingering, because I know my wife to be a very hardworking, mentally healthy person and over time I’ve come to suspect you are the same.  I don’t know how to cure this illness because I don’t know what’s causing it.  I wish you well.”  I’ve struggled with varying degrees of ME ever since and have probably had it since I had glandular fever at age 19.  Most of the time it has been treated, by medics, as depression that is not reliably responsive to medication.  I have worked my way through the gamut of antidepressants while my longsuffering husband has tolerated my many years of varying health/illness.

24 years later, when our son Ali couldn’t recover from costochondritis, the local GP  treating him at the time asked me to stay in the room when he had finished talking with Ali.  He said, “I suspect this is ME/CFS and for Ali to recover you are going to need to be a ‘good parent’ here.  He believes he is ill so is exhibiting ‘illness behaviours’.  You need to ignore these behaviours and insist he continues at school as usual otherwise this could become a longstanding condition.  It’s time to be a strict parent.”  I took our (fevered, very weak, head aching, chest pained, perpetually nauseated, weight losing,  known in our family as “Mr Bounce”) son home knowing that there wasn’t a chance that he was ‘making this up’.  He loved school, especially PE and History.  He wanted to succeed at Maths.  He planned to train to be a PE/History teacher in a High School.  He had a large, longstanding group of friends who he looked forward to being with every day.  He got on with his teachers and used his self-effacing sense of humour and his very long stride to stay out of trouble with the bullies.  He was skilled at caring.  He loved playing football.  And he absolutely lived to be active!  He HATED being ill!  He HATED being ‘left behind’ in school!  He desperately wanted to stay with his peer group but couldn’t stand up or pay attention for more than a minute or two because he was so perpetually exhausted.  He didn’t have the energy to eat, socialise, study or much else.  These difficulties continue to this day.

A hallmark symptom of ME/CFS is that your energy system is broken.  You ‘pay for’ every little exertion and any exercise makes you more ill rather than less ill.  Some days are better than others but gains are marginal and easily squandered by overdoing it even a little bit.  Post Exertional Malaise is the posh term for this ‘payback’ or increase in exhaustion and illness.  It can be delayed by a day or three but when it hits you feel absolutely dreadful (like the worst flu you have ever had) and have little or no control over how long the payback lasts.  Often you don’t recover your previous energy level so it is all too easy to slide further and further into severe (housebound or bedridden) illness.  Each person with ME has a baseline of energy which they strive to maintain by pacing themselves.  Adverse events, socialising, changes in weather, exposure to other people’s bugs, doing too much and often no discernible cause at all means that ME sufferers move up/down from their baseline in ways that are not anywhere near as controlable as would be useful.  This makes it almost impossible for an ME sufferer to commit to any future plans because we quite genuinely have no idea how our energy will be on a given day.

Possibly one of the most misunderstood aspects of ME is that ‘paying’ for any degree of activity/exertion is partly immediate but also largely in the future.  By this I mean that while I’m doing something, like writing this page, I get more and more tired with a speed and degree which is not ‘normal’.  My brain works less and less well.  My typing skills go to pot over a short period of time.  All of this happens at a much more rapid rate than when my ME is not active.  Were you to watch me, you would see me rapidly flagging.  However, what you will very seldom have access to is the much bigger and more painful ‘payback’ that will hit me within 24-72 hours.  That’s when I really pay for the damage that today’s overexertion has precipitated.  That’s when the what I describe as a ‘biochemical storm’ hits with a vengence.  In my case it’s like the worst possible flu plus lead instead of bones plus visual disturbances plus intollerance of sound and light and smells plus zero concentration and limited speech and burning up both day and night.  This can go on for days.  If I’m lucky it gradually passes and I return to a sort of baseline.  If I’m unlucky a new baseline is established that is lower than the previous one.

Referals to various specialist services (in both our experiences) have returned an almost never-ending list of ‘not ………’ results.  Whatever ME/CFS is, it is hard to pinpoint using current GP/specialists’ tests.  In addition, ME/CFS is one of the “hidden illnesses” in that you rarely get any externally visible distinguishing signs such as a rash, broken bones, limbs missing, a bandaged head, stitches or staples and you don’t usually turn bright yellow, etc.  Apart from being extremely thin (in Ali’s case) and extremely fat (in my case) there is little visible sign of our ills unless you knew us in our ‘previous energetic lives’ or around us long enough to notice that we are able to do very little each day.  This hidden-ness causes HUGE problems anytime we are in public or evaluated for anything, since most people make sweeping assumptions based on what they can see ‘in the moment’.  Some common unhelpful assumptions include:

  • “They’re here so they must be OK”
  • “They look normal so they must be normal”
  • “They got here so there is nothing wrong with them!”
  • “They can talk now so they must be able to talk like this all the time”
  • “They have eyes and learned how to read so they must be able to read now”
  • “They got to this event so they must be able to work”
  • “They can stand up for a couple of minutes so must be able to shop/prepare/eat/clean up after making food”

The increasing degrees of exhaustion in response to doing too much seems to shut down various physiological systems in order to preserve life by keeping core systems functioning.  The pecking order of this shutting down process can be different for different people.  I lose the ability to find the right words first.  Then depth perception goes so I get very clumsy and shouldn’t use sharp knives, cook, walk or drive.  Then I also lose the ability to switch between or process multiple sounds – if two people are talking I can’t focus on one long enough to gather the meaning as I can’t block out the other.  Then I get angry because anger produces a little dose of adrenalin which gives me just enough ‘kick’ to finish what I’m trying to do (but I know I’ll be paying dearly for having overdone it).  Then it’s gut trouble, bladder trouble, migraines, grinding bone and joint pain, almost paralysing muscle weakness, all those horrid flu symptoms and very disturbed sleep all at the same time and for days on end with no way to relieve any of it apart from resting until it eases.

There is loads of new and interesting research about ME/CFS but the UK currently seems stuck with a flawed study from a few years ago (partly funded by the DWP) which says CBT (cognitive behaviour therapy) and GET (graded exercise therapy) are a working treatment.  Sadly, the poor research methodology in this study ‘demonstrated’ a degree of recovery that is not the experience of any ME suffers I have ever met.  This ‘treatment’ has been applied around the world and it will, no doubt, take a while for the air to clear once the flaws in this particular study are accepted for what they are.

That’s enough!  I’m exhausted from writing this!  So here’s a taster or what “I’m exhausted” actually feels like every day….  Here’s the link to a little video made by a delightful young person with ME who explains what ME exhaustion feels like.  The difference between one day and the next is down to “the weight of the weights”.

And for those who like to get into the science stuff, will take you to interesting slides from Dr Naviaux’s most recent presentation on his current research into ME.  His is one very interesting set of findings – there are many other interesting new studies if you fancy looking at a site such as  Dedicated researchers are methodically converging on an understanding of what goes wrong in ME.  Then they can start looking for how to repair it.

And for a broader view of what it’s like to live with this mystery illness there is Jennifer Brae’s movie which I highly recommend.

Or there’s a recent article about ME/CFS folks’ difficulties in accessing services in Australia as they live with the fallout from the same PACE study as still reins supreme in the UK.

Or a Huffington Post article on methodological weakness in the PACE study

Or there’s a splendid podcast from Science Friday’s Undiscovered team. They look at the differences between the views of the researchers on the PACE study and the experience of ME/CFS sufferers and how these differences eventually led to an expensive court battle with implications for science in general

So far, the PACE research – partly funded by the DWP (Department of Work and Pensions in the UK) –  continues to be relied on by government policy makers and underpins the psychosocial/psychosomatic model which pervades current UK social policy.  Nor has there yet been a retraction from the various prestigious journals that published articles based on this flawed and as yet unacknowledged ‘conflicts of interest’ research.  We live in hope!