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.





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