Nobody’s Children Adopted?

If you haven’t read yesterday’s blog, you might want to read it (below) before reading this one.

Yesterday after publishing ‘Nobody’s Children’ I received an amusing (but accurate) email from a family friend, Victor. I’ve always called him my adopted Daddy and I think he is quite upset by the lack of understanding of and treatment for M.E.

His email:
I read about your latest NHS encounter, became emotionally involved, defensively I then switched to analytical mode and came up with this:

That UUP ‘Specialist’ you met deserves almost as much sympathy as you do. Put yourself in his position! There he was, all full of confidence in his knowledge and expertise in his speciality, framed certificate on the wall to prove it all and suddenly, OOOOPS! He is confronted with something he knows absolutely nothing about; your ME.

Like a plumber dispatched on an emergency call-out who finds himself being expected to deal with a house-owner’s heart attack. Any average plumber will have the wisdom and good manners to declare his ignorance of the coronary technology required, decline the job and pass on the responsibility to someone better qualified. That was an attitude regrettably absent during your consultation, although vast, reverberating, dark caverns of slimy ignorance were clearly in evidence.

But the really BIG mistake was not made by the unfortunate ‘Specialist.’ He was clearly Unfit for Purpose in the circumstances, exactly like the plumber who was sent to the wrong address. But that wasn’t the plumber’s fault. BLAME the DISPATCHER or matchmaker or computer operator or whoever else it may have been who arranged for you to meet THE WRONG PERSON who happened to be UUP (UTTERLY UNFIT for PURPOSE).

If the matchmaker/ dispatcher doesn’t know the difference between ME and a JCB, and gleefully clicks selection boxes on a computer screen that ensures a balanced workload for all classes of medic, regardless of suitability, surely that is the area that needs urgent attention in the NHS?

My reply
Oops! I am the UUP!!! Nobody could tell me who to see so I worked out who was closest to me!!!

His response
Rubbish! How can YOU be the UUP? The system failed you, so you tried to DIY. Good on ya!

It made me think, that ultimately until we understand enough about what causes M.E. and importantly this information begins to trickle down to the doctors (though ideally in a well-structured, efficient education program for GPs, physios, occupational health, consultants, nutritionists, psychologists and psychiatrists amongst others) there will remain only a few specialists out there who are FPs (Fit for Purpose).

Stanford, March 19th 2014, may well have seen history made for ME/CFS patients. An international symposium of M.E. experts yesterday presented to a standing room only audience the key findings of a wide range of studies. These finally make it possible, that with just a little further research, an understanding of causes and treatments will be found.

ME/CFS is a multi-system disease, it is far more complex than many diseases out there. This is reflected in the wide range of papers presented yesterday.
1. Daily fluctuations of Cytokines
2. Gene expressions
3. Cardiovascular Aging
4. MRI findings
5. EEG studies
6. Medical care of patients
7. Inflammatory and Autoimmune profile
8. Microbial diagnostics and discovery

A wonderful man, Cort Johnson, a journalist who has set up various high profile M.E. websites (e.g. Phoenix Rising / Health Rising) and an M.E. patient himself for 30 years, spent 5 hours Tweeting the key findings as they were presented.

I am no medical expert and I struggled to follow much of what was said but I do understand people’s reactions to this event and more importantly those of the real experts (the FPs). Through his Tweets the ground breaking nature of this symposium became incredibly clear. Phrases such as, ‘high hopes’, ‘convinced that inflammation is the key’, ‘ME/CFS is the last big disease to make your name in’, ‘it is an inflammatory disorder’, ‘the most amazing MRI presentation I’ve ever seen’, ‘a very strong result’, ‘bingo’, ‘ME/CFS is going to teach us so much about the brain’, ‘landmark study’, ‘staggering results’, ‘ME/CFS is not a psychosomatic disorder’, ‘sense of urgency’.

Various presentations also mentioned how many of their research programmes were ongoing and expected exciting results in the next few months. Many mentioned that they thought that soon there would be a real understanding of its causes and even possible treatments. Many, however, also mentioned how lack of funding made it a struggle to do.

How many out there, if they have heard of ME/CFS would say, “oh, you mean like Yuppie Flu”? The media has spent decades (largely dating from the 1960s-70s) stigmatising M.E. The psychiatrists colonised it for their own end, accusing the patients of being depressed or crazy or the like, based on little or no empirical evidence. If you can’t explain it in empirically, then it must be in your head theory.

The people who knew this stigmatising was wrong were in the weakest of positions to fight back. I currently could probably walk for 10 mins at a push and I am healthier than some so how do we march in protest? How do we force ourselves onto Talk Shows and into government offices until somebody will listen? The answer, most of us can’t, at least not very easily. So we depend upon the healthier amongst us and people who have never had this illness to fight for us. We are not an ‘attractive’ illness however, we are the ugly girl at the party that the other girls won’t play with. We come with a false stigmatism, a deep misunderstanding among many in the medical profession. We are not the go to research area. We are not glamorous and apparently groundbreaking enough. (Seriously is the above not groundbreaking?!)

Which group experiences on average more pain? M.E. patients, spinal cord injury patients, patients with chronic pelvic pain or muscular dystrophy patients? Wrong – an M.E. patient. Would the public be happy to ignore those other ailments, would they allow those patients to be told “it’s in your head” – good god no! They’ve worked out causes for the other illness, they have empirical data. Well so do we – almost.

The latest fad on Facebook is the makeup less selfie for cancer. As my friend put it, that doesn’t do much good, raise money instead. While I am in total agreement with her, how easily could I get thousands of people doing the same thing for M.E.? How many schools would have non-uniform days for M.E.? Like I said, we are the ugly girl at the party.

So what can we do – we from our beds can do little but use our words to fight for our corner. Others, friends, carers etc can do more. Help us to be adopted so that we are no longer Nobody’s Children.

I have listed below organisations you can make donations to, mainly UK based. As this blog is read around the world, if you know of others let me know.

Do something so that M.E. patients no longer cost the US in earning and spending losses alone, $18-51billion (£11-30b) a year and the UK, £102 million ($168m). M.E. patients tend to be the strivers, the driven, the ambitious. Do something so their intellectual wealth can benefit your country.

UK
Invest in M.E.
Walk for Me – raise money by doing a sponsored walk for me
Biobank – researching a cure for M.E. London School of Hygiene and Tropical Medicine

US

Donate to Stanford ME/CFS research

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How do you feel about this topic? Do any of its ideas resonate with you? I'd love to know your thoughts! K

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