Deja Vu

I was diagnosed with ME in January of 1994.  In October 1996 the Royal College published a report on ME in the UK, the first ever official report into the condition here.  Sufferers were excited to finally have their illness recognized after years of being totally ignored by the medical profession and were hopeful the report would help doctors effectively manage the condition.  Sadly it wasn’t to be.

The Report changed the landscape of ME for the worse and we’re still living with the consequences two decades on.  Some of the report’s findings are listed below:

  • The disease name was changed from ME to CFS because “The term ME…….. may mislead patients into believing they have a serious and specific pathological process affecting their muscles and brain”.
  • The conclusion that “primary care or community cases of CFS fulfil criteria for common psychological disorders”, although the authors did conclude that “a proportion (25-40%) do not”.  This did not stop every doctor in the UK concluding that all ME patients were mentally, not physically, ill.
  • “At present there is no convincing evidence that common viral infections are a risk factor for CFS” despite the diagnostic criteria at the time needing an acute viral onset to be present before ME could be either suspected or confirmed.  So the diagnostic criteria were revised and you no longer needed a viral onset, which of course then meant that people were diagnosed with ME who didn’t actually have ME which has tainted research into the disease ever since.
  • “The depression which is found in half of patients cannot simply be regarded as secondary to the disability and uncertainty associated with CFS”, in other words depression is at the root of ME, not a by-product of having to live with such a devastating disease.
  • “The number of psychiatric symptoms increases with the number of somatic (bodily) symptoms” which was interpreted to mean that the more sick you are the more deluded and mentally ill you are, not that the more physically ill you are and the less life you are able to lead the more likely you are to be sad about it.
  • “Structural and functioning neuroimaging and neuro-endocrinological investigations have not led to consistent abnormalities being demonstrated in CFS……..this may also be due to such confounding factors as sleep disturbance and prolonged inactivity.  Current findings in relation to muscle dysfunction and immune abnormalities are open to several interpretations. There is no compelling evidence for a substantial primary role of neuromuscular dysfunction.”  In other words, we are ill because we rest too much, not because there is actually anything physically wrong with us.
  • “Reports of cognitive abnormalities are similarly inconsistent.”
  • “Gradual, planned, mutually agreed and monitored increase in exercise forms the cornerstone of treatment” even though in every ME Charity patient survey ever conducted the number one thing which made sufferers worse was exercise.

Ever since this report came out we have been fighting the stigma attached to this disease and the idea that there is no evidence we are physically ill and all we need to get better is some CBT to deal with our fear of exercise.

I woke yesterday morning to find that in 2015, nineteen years after the Royal College’s Report into ME, there has been a large research study (the PACE trial) which concludes basically the same thing.  I can’t even describe my feelings as I read the Telegraph article knowing what the fall-out is going to be and the devastating impact this will have on patients.  Again.  The fact that the PACE trial is fundamentally flawed in just about every way is irrelevant and the fact that there have been some excellent rebuttal letters written outlining said flaws is also irrelevant because they won’t grab the headlines – all anyone will remember is that ME can be cured by positive thinking and a bit of exercise and patients will have to live with the legacy of that…….I just hope it’s not for another two decades.

I can’t dwell on this research or its consequences – if I did I would want to slit my wrists.  I never see doctors about my ME and haven’t done for years because it’s totally pointless.  Thankfully (?!) for me I also have Ehlers-Danlos and put this on forms for welfare benefits because to put ME has proved the death knell in the past for me to obtain any financial assistance.  I’ve tried to get researchers interested in my mast cell theory for ME and failed.  I’ve tried in the past to be included in research but always told because I can’t take drugs that I can’t take part, despite nearly all of my severely affected ME friends being unable to take drugs too – why don’t researchers look into that little nugget, instead of dismissing it?  The ME/CFS research team in Newcastle are the first in the country to actually be recruiting severely affected patients into one of their current research trials, only I’m excluded because I’m no longer severely affected.  I would have thought it would be very beneficial to look at one of the only adults in the country to have been bedridden for nearly 10 years then to have made a good degree of recovery but what do I know?  I’ve also been waiting and waiting and waiting for my invitation to be included in the ME Association’s national biobank and heard nothing.  As a former member of the CHROME database I was supposed to be amongst the first sufferers to donate blood to the bank and am incredibly disappointed it all seems to have ground to a halt.

We need a diagnostic test for ME.  We needed it twenty years ago and I can’t for the life of me understand why researchers have made zero headway into the cause of ME and consequently a diagnostic test of some description.  And, yes, I do know about all the research which has shown various abnormalities in ME but there is no diagnostic test much as we all wish it were different.  No study has consistently found a reliable marker in all ME patients, although I suspect if the severely affected had been included in research during the last 20 years instead of excluded researchers would have fared better.

Excluding severely affected ME patients in research is like studying heart disease and only including people with angina while excluding anyone needing a bypass.  Oh, and including people with symptoms which appear to be heart related but turn out to be reflux or anxiety and nothing to do with the heart at all!  The current research situation is a sodding mess and is unfortunately going to get us precisely nowhere.

ME Action has launched a petition to retract the conclusions of the PACE research trial which I’ve signed.  It won’t do any good because you need over 100,000 signatures in order for it to even be noticed by Government but at least I feel I’ve done something.  And now I need to let the whole thing go because I’m too sick and tired to do anything else.

 

 

 

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3 thoughts on “Deja Vu

  1. Jenny Kendall

    Well said. I care for my daughter who has had severe ME for 23 years and I am pig sick of her being upset by stupid and inaccurate so-called experts . She is too ill to fight back against this ignorance herself so I’m sounding off on her behalf.
    I’ve followed your blog for some time and enjoy your ‘take’ on life. I admire and recognise the effort you have to put in . It makes me feel guilty for being (relatively) fit and not fighting harder.

    Liked by 1 person

    Reply
    1. Jak Post author

      Thanks for the kind comments Jenny – really glad you like my blog.

      So very sorry to hear about your daughter – I can’t even imagine what 23 years of severe ME must be like.

      No need to feel guilty – being a Carer is a difficult, stressful, exhausting full time job so you have quite enough on your plate without doing anything extra!

      Jak x

      Liked by 1 person

      Reply

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