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 to make sure that the benefits are adjusted to be somewhat adequate to an individual’s needs or withdrawn if no longer appropriate.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 – https://medlineplus.gov/ency/article/001555.htm .  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:    http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60096-2/abstract  (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 https://www.theguardian.com/commentisfree/2016/sep/30/me-chronic-fatigue-syndrome-patients-suffer-put-off-treatments-our-research

But ME patients found it very hard to believe (given their own experience of exercise) and started asking questions  https://www.nytimes.com/2017/03/18/opinion/sunday/getting-it-wrong-on-chronic-fatigue-syndrome.html?_r=0

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  http://www.meassociation.org.uk/2017/03/pace-trial-commentaries-in-the-journal-of-health-psychology-made-open-access-thanks-to-the-mea-29-march-2017/

Unfortunately, the ‘biopsychosocial model’ used in the PACE trial has become entrenched in the UK Welfare system  http://www.disabilitynewsservice.com/biopsychosocial-basis-for-benefit-cuts-is-cavalier-unevidenced-and-misleading/ 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 http://www.comriecroft.com/tea-garden/introduction.html ) 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’?