Tag Archives: MEcfs

How bad science misled chronic fatigue syndrome patients

I get all my medical news from twitter, and I haven’t been on for a while (because typing on an android screen keyboard is too much like hard work when your hands and wrists have no strength), so I missed the news that Wellesley’s team had been forced by court order to release the data from their faudulent pace study earlier this year – Thank-you to everyone that made that happen. Full details in the article below.https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome-pace-trial/

As everyone was agreeing on twitter when I looked last night, it’s about time to hear some very loud apologies from journalists, the medical establishment, and especially Simon Wellesley himself. But we won’t be holding our breath.

My question now is, when so much evidence was already out there, and every other medical authority – including the World Health Organisation – agree that ME is a neurological disorder with a possible viral component, how on earth did the UK allow psychiatry, of all the inappropriate disciplines, to take over our ‘care’ at all, ever, in the first place, let alone for so long. And when will they finally be kicked off the case? It would be difficult to find any doctor, team, study, or discipline more thoroughly discredited.

Postnatal Depletion—Even 10 Years Later

This is a really interesting article, and I can’t help but notice the similarity between the symptoms of what the author calls ‘post-natal depletion’ and ME/ CFS/ Fibromyalgia – doctors and scientists and article writers are constantly coming up with new theories,  but given that I got ill right after giving birth in 2003 (and the fact that I have had 9 pregnancies altogether, and at least 5 of those were back-to-back without a break), I wonder whether this might more readily explain how and why I became ill. And perhaps suggests a way forward to get healthy again.

http://goop.com/postnatal-depletion-even-10-years-later/

Progress

I have a new phone – an android,  a Samsung Galaxy Note 4 to be precise. It’s groovy because it has a stylus but I am missing the Blackberry keyboard a lot. I’m finding the new phone far less practical in terms of usability for somebody with weakness in my hands and wrists.

It’s too heavy and requires more movement in both hands. I am somewhat tempted to get myself another old Blackberry but I stupidly signed up for a contract. I’m trying to persuade my daughter to take it off my hands! 🙂

The worst thing is the feeling of lack of control – several times I have started posts and lost them.

A quick bit of good news next – today I had my first appointment with the good GP who just came back from maternity leave and let me say it was worth waiting for her.

I’m too tired now to go into detail but it’s all good. Maybe I will write again tomorrow  (but I will probably use the laptop if I can manage it).

Dreams of the Good Life

The_Good_Life_(logo_for_1975_TV_show)

I had a really good run of about 8-10 weeks of feeling much better physically at the beginning of this year. I can’t explain it – there seems to be no obvious correlation between my physical health and my state of mind, and no clear connection with my dietary habits or lifestyle. I wasn’t eating anything different than I was in the Autumn and up to Christmas when I was really ill (actually, I think it has been worse this year, as we haven’t been able to afford a good diet recently); and yet, I had a very welcome reprieve.

But now I have begun to notice the clear signs of relapse, and I don’t know what has caused that either. It is a challenge to slow down and take it easy (which is essentially the only thing you can do in response to an impending ME relapse) when you are already generally so inactive.

I have noticed my dreams becoming much more vivid and intense again – while I was feeling better, I didn’t seem to dream at all. (If I recall any worth mentioning, I will share).

I really desperately want to turn my life around, get well, get fit, get slim and healthy, reach my potential, start working again. I have lost more than a decade to ME, and I don’t want to lose any more. I really do not want this.

I can’t help thinking about positive thinking and the ‘law of attraction’ again. You’ll know that it irritates me no end, and I have written about it a couple of times. And yet, and yet. I keep coming back to the whole idea.

Am I attracting bad luck? Am I somehow causing my ill health? Am I mis-using the ‘power of words’ and bringing negativity into my life? And by the same token, is it possible to change things around? Stem the tide of bad luck? Attract light and life and all good and happy and lovely things instead?

Or is it just a matter of frame of mind?

I find myself dreaming (in the sense of fantasising, not actual sleeping dreams) of a better life – a life where I am healthy and active, and working hard, and able to make a better life for us all round (actually, you probably already know that my fantasy is having a country farm, working on the land, and practising increasing self sufficiency – the ‘Good Life’).

Tom and Barbara in their garden, The Good Life, BBC TV

Tom and Barbara in their garden, The Good Life, BBC TV

One of the ‘positive thinking’ gurus on twitter suggests that the way to invite what you want into your life is to behave as though you already have it.

Well, I can’t physically pretend I’m well, or go digging the land, but I think I can practice the happiness that I imagine I would have if I had that life, choose joy, pretend that I am already there.

Make believe.

Will it make the real thing come a step closer? Will it invite happiness into my life? I have no idea. But it seems considerably preferable to concentrating on how terrible reality is.

Disturbing Dreams

Warning for possibly inappropriate content, depending on your sensibilities…

I had two dreams last night, both of which included disturbing content, but on reflection I think I will share them anyway.

In the first dream, I was visiting with a family that I knew in childhood. There were three boys, all much older than me, I’m guessing the oldest was at least 15 years older than me. But I was on the verge of teenage and ‘fancied’ them all. «Blush»!

The dad was a bit of a tyrant, did a lot of shouting and thought he was right about everything, and he was telling us the very strict itinerary for our days out on this holiday, and then he sent us all to bed, and everybody had to be immediately silent.

The next day, we boarded a coach, and I sat at the back with the eldest of the boys… and secretly had sex on the seat at the back of the bus while his dad sat at the front and thought everything was under control.

«Blush»

In the second dream, I found that my period had started, and I was stranded without a pad or even panties, but bizarrely I had a towel, so stuffed that between my legs and started walking to find somewhere to stay.

I came across a commune where I was invited to come in and stay, but I had to sign some paperwork which I signed without reading.

Inside, I was looking for a room, knocking on doors, climbing flights of stairs, walking down corridors, but I couldn’t find anywhere.

And then there was a crash, and apparently some dangerous people had broken in – nobody knew whether they had guns or what – and somebody opened a hatch and invited me to hide there with them…. I still hadn’t sorted out my problem, but we had sex anyway.

«Blush»

So… A couple of things here. I’m much more attracted to my childhood friend than I realised? No! (Hope he’s not reading as I think it would be easy to identify himself! Lol!)

Firstly, the period thing – as a miscarriage/ babyloss survivor who still wants babies, every monthly period feels like another loss, and given my age and my state of health, it’s really very unlikely I would have any more babies. I can give mental assent to that, but emotionally I haven’t accepted it at all and to be honest I don’t know how to ‘move on’.

Secondly, the sex. Well, you know, I like sex as much as the next girl. But sometimes I feel a little bit obsessed and insatiable, and I suspect that it’s not just having a big sex-drive, but rather that it’s a symptom of neurological disorder which makes me wonder if hypersexuality commonly occurs with ME (or MS even?). I know that it can be a feature of Bi-polar disorder, which I have previously mentioned (as I said, I don’t think I have anything like full-blown Bi-polar, but it’s in the family and I suspect I have Bi-polar tendencies). But it can also occur as a result of brain trauma or injurt, or as a result of degenerative neurological disease.

How do you know if your sex-drive is ‘normal’? Apparently the American psychiatric establishment won’t classify hypersexuality as a disorder because that would be prejudiced against people who enjoy sexuality outside the norm. But surely if it becomes problematic, that’s enough to say it is disordered.

What about hypo-sexuality? At what point does low sex drive become an issue? (Perhaps if you’re married to somebody with hypersexuality?)

And, as a society, can we still not talk about this without getting silly, or attracting loonies? Really hoping that I don’t get spam comments now, but anyway. There it is.

Wilderness Experience

I have a confession to make. I try not to let this blog get too personal – I prefer to keep it ‘on topic’, just talking mainly about cooking and housework and crafts.

But here is the thing. I am really, really struggling.

I know that we are blessed in many ways. After our landlord evicted us, we were re-housed against all the odds, in the town where we wanted to be. That was pretty miraculous, but it is far from ideal.

The house that we were put in has turned out to be totally unsuitable – there is no garden for the children (they were pretty heartbroken when we had to sell their trampoline), and since it is designed over three floors (meaning that I have to be more active than I can cope with), I have got much sicker since we moved here. In fact, I seem to be in relapse. I’m arguably sicker now than I was when I first got ill. It’s too small, so most of our books and possessions and furniture is still in storage, and our finances are a nightmare. My kids are ill, there just seems no end of massive, insurmountable problems.

I feel as though I am in the ‘pit’.

The result of this is that I am finding the upkeep of the housework impossible, and I’m not well enough to do the cooking. Added to the physical issues, or perhaps as a result of them, I think I can safely say that I have descended into a deep depression.

And I am feeling a failure.

We have had a run of more than five really rough years now, and I feel as though I have been brought into a long-term, painful wilderness experience, or a ‘Job’ experience, and I don’t really understand why.

So many scripture passages talk about blessing following the keeping of Torah, and for those who bless Israel. So I just keep wondering, what have I done wrong, and why am I missing the blessing? And when is it going to end?

I pray, I read the Word, I try to remain faithful. But it feels as though my prayers fall on deaf ears, and I have never felt more distant from Abba.

I never expected the ‘narrow way’ to be quite this rocky.

Budget Healthcare

I know that we are supremely blessed out of all the world to have a publicly funded healthcare system. I am extremely grateful for it. In the case of my son, it saved his life… but only after almost taking it through misdiagnosis and negligence (see the page above on Type 1 Diabetes).

I don’t know whether it is the same across the board or whether my family and I have been particularly unlucky with bad and lazy doctors, but I could recount a catalogue of poor care and misdiagnosis. In fact, I think I will (indulge me):

  • When I was 12, I was knocked off my bike in a hit and run incident, causing a head injury and concussion (and actually who knows what else, as despite a litany of symptoms after this I have had no follow-up?) There was no room on the children’s ward, so I was placed in a single room off the men’s geriatric ward. I was allowed no visitors except at the ward’s very limited visiting times. I didn’t even receive nursing from the children’s ward. So to put it mildly, a horrible experience all round. (Incidentally, the police never investigated the hit and run either, so some guy who probably thought he killed a child – he didn’t stop to check – was just left to carry on with his life without so much as a caution.)
  • When I was 17, I went to the doctor reporting abdominal pain and a year of missed periods. This doctor had already missed my brother’s Crohn’s for more than ten years so I had armed myself with information. I suggested that I thought I might have ovarian cysts, so she sent me for a scan which confirmed my diagnosis, but I was told they were best left alone. I was diagnosed with Poly-cystic ovary syndrome (PCOS) but not told. I did not find out about this diagnosis until another doctor happened to find it in my notes 25 years later, despite having multiple miscarriages in the intervening period.
  • When I was 22, I had a debilitating throat infection with swollen glands which kept me off work for more than two weeks. The doctor refused to visit me. When I finally was well enough to go and see her, she told me it was ‘probably’ glandular fever but refused to write me a sick note for work. (Incidentally, I don’t think this was the first incidence of this illness, and I suspect it goes back to early childhood.) I remember getting in a lot of trouble for that!
  • In 2003 right after the birth of my fourth child, I seemed to have a recurrence of this illness which absolutely knocked me down with widespread pain, digestive troubles, and a host of other unexplained and apparently neurological symptoms. I can’t be sure whether or not it was the same thing or something different, as I was never tested for EBV (The Epstein-Barr Virus, which is the virus responsible for both glandular fever and tonsilitis.) I went to the doctor multiple times, only to be told that I was depressed! (what?!) Later, this bizarre misdiagnosis changed to indigestion (what?!) and IBS caused by stress (what?!) Lastly, she suggested Chronic Fatigue  (which seems quite bizarre to me as I never once mentioned fatigue as one of my core symptoms although it was present, it always seemed to me to be a secondary result of the illness, as is depression) but then told me she didn’t believe in it anyway and refused to diagnose it!! (what?!) Finally, after 13 years and several different opinions from different doctors, I finally got a diagnosis of so-called ‘ME/CFS’. A step in the right direction perhaps but not much help, and really on no basis at all.

Jackie commented yesterday on one of my previous posts on ME, drawing my attention  to some articles explaining the very fundamental differences between ME and CFS, and I will share them below. As I am sure I have mentioned before, the NHS has ignored the WHO’s determination that ME is a neurological illness, and instead has chosen – under the direction of a group of now largely discredited psychiatrists who like to believe that it is an imagined illness – to use their own ‘NICE’ guidelines which conflate ME with ‘Chronic Fatigue’.

CFS and ME Comparison Chart

CFS is Always a Misdiagnosis

ME v CFS – They’re Not the Same!

Reading through these important articles (and I recommend the Hummingbird Foundation as one of the few places where you will find reliable information about ME – see my health links to the right), I am struck by how easy it would have been to have sent me for a brain scan when I first got ill. Either it would have shown something and I could have received a correct diagnosis immediately, or it would have been clear that it wasn’t ME and further investigation needed to be undertaken to determine the true cause of the illness.

But the NHS does not routinely offer brain scans to people who present with ME-like symptoms. (In fact, I am still pushing for a scan relating to my head injury more than 30 years later because I strongly suspect pituitary damage, but I might as well be banging that head up against a big brick wall!)

To save a bit of money, the NHS lumps genuine ME together with unexplained CFS and recommends only a treatment which can severely damage people with genuine ME (although this may be alright for people with chronic fatigue that isn’t ME), with no regard whatsoever to the years of suffering and lives wasted. The same is true of people with clear Thyroid conversion issues, but whose TSH appears normal. (More to say on that another time.)

ME/ CFS/ Fibromyalgia (which may or may not be the same illness) used to be diagnosed by a process of exclusion. But when I went to the Rheumatologist and received the dubious new diagnosis of Fibromyalgia, he told me that this is no longer the policy in the NHS, but rather, a (mis)diagnosis is offered on the basis of what it ‘appears to be’. This is truly scandalous. So I was not tested for Rheumatoid Arthritis, Sjogren’s or Lupus, despite having an overwhelming list of symptoms that would warrant such testing.

When I went last week to my first meeting of the local Fibromyalgia support group, I was surprised to find a large number with multiple diagnoses including three with MS, and lo! When I looked up co-morbidities of Myalgia Encephalomyelitis, MS was listed as commonly occurring together with ME. But this is important – if you were once diagnosed with CFS but then later received a diagnosis of MS, CFS was a false diagnosis because the nature of CFS is unexplained fatigue – if it goes on to be explained, it ceases to be CFS. But if you had a diagnosis of ME and then later received a diagnosis of MS, they could be legitimately occurring together.

But this can only be determined by proper testing, which is not generally available on the NHS. The only choices available to an NHS patient are to fight and battle and shout and scream in the hope of getting the help you need (and risk getting labeled as a trouble-maker, or worse) or to get private testing done. Most people of course do not have that option open to them.

When my Dad was rushed into hospital by ambulance with heart failure, the front-line care appeared absolutely top-notch. We were all very impressed. But after being bullied into having an operation that he wasn’t strong enough to survive (for what nefarious reason I cannot determine), and having had a stroke on the table which caused a severe personality change, depression and emotional lability which made his last year hell, he was never offered any kind of aftercare. Physiotherapy was not even suggested until the week before he died, when of course it was far too late. Front-line care may be impressive, but the reality for the day-to-day care of living with chronic illness can only be described as poor in the extreme.

I don’t knock the NHS because I hate it. I love it, and I want it to continue and to improve, and I can only think that it has been mismanaged the way that it has for the express purpose of dismantling it and selling it off. I wish I knew what could be done to reverse the trend. But I think that patients can and must speak up when they receive poor care and demand better.

Pawn of Prophecy

pawnofprophecy

The ME/cfs Book club challenged us to read a book we already read, so I just read this again after 20-ish years, and it’s still good! I love David Eddings’ style and the way he weaves all the strands together. But I’m surprised I didn’t go on to read the rest of the series, as it feels as though it ends with a lot of story yet to be told. So I’ll be hunting down the next one and the rest of the Belgariad series, and maybe all of the David Eddings collection.

Garion is the central character in this first book of the series, with no real idea of who or what he is, and his journey from quiet, inconsequential farm boy to consorting with kings and nobles is really a journey of coming-of-age.

The idea of being a ‘pawn of prophecy’, having a plan and purpose that you know nothing of, and having everything happen around you, with the powers that be moving him around the ‘board’ of life, but at the same time not wanting to believe that such things are true or possible, makes Garion easy to identify with, so I’m interested to know what will become of him (although there are plenty of clues, I won’t give it away – the reader knows really, but Garion still hasn’t quite figured it out).

I’m also hoping that, in the next book, Pol will soften a bit and let in some romance with the trusty Durnik who obviously dotes on her. I hope that’s not too spoily. 🙂

Nice, gentle escapism with a wholly believable otherworld of gods, sorcery and deception, although I did find it hard to keep all the characters, gods and nations straight in my mind – who was who and which nation they came from (especially when they started introducing new names!), who was married to whom etc. But David Eddings’ skillful writing had me so immersed, that I felt I was in the places and journeying alongside the characters. One of those books that I’m really sad to finish!

Book Review: The Guernsey Literary Society and Potato Peel Pie Society

guernsey

The Guernsey Literary Society and Potato Peel Pie Society by Mary Ann Shaffer and Annie Barrows

“That’s what I love about reading: one tiny thing will interest you in a book, and that tiny thing will lead you to another book, and another bit there will lead you onto a third book. It’s geometrically progressive – all with no end in sight, and for no other reason than sheer enjoyment.”

I haven’t read many books this year. I have started quite a few, but not sure I have finished any of them (unless you count textbooks and literature for homeschool, which would bump the number up a bit).

I had forgotten how much I loved reading and enjoyed literature until I joined a new group on facebook, The ME/CFS Book Club. It’s now one of my favourite places online, and certainly my favourite facebook group.

This book was one of their monthly reads and although I am running behind, I decided to get it because the title was so intriguing.

It ended up being the best book I read this year, it was probably the only book that made me enthusiastically want to read it to completion, and I laughed and cried and felt deeply invested in the characters’ lives all the way through it.

It is written in the form of a series of letters, between a young writer, Juliet Ashton, her publisher and friends, and members of the Guernsey Literary and Potato Peel Pie Society after a Mr Dawsey Adams contacts her about a book of hers by Charles Lamb that had found its way into his possession, and she becomes intrigued about the society’s unusual name.

The setting is post-war London and Guernsey, and the letters convey the story of the German Occupation of Guernsey during the war, the grief, sorrows and anguish as well as the joy and adventures of the eccentric islanders during that time, and the friendships forged through their common experience of war, and the beauty of literature that makes the increasingly brutal occupation bearable.

I loved the lively way the letters were written, the post-war British voices rang surprisingly true considering the authors were American. It was quite unlike anything I have read in a long time.

The ending is surprising and beautiful, with unexpected friendship, love, romance and comedy, and it is filled with delightful literary references and connections. (The story about Charles and Mary Lamb was so dreadfully sad and interesting, since we have loved Lambs’ Tales from Shakespeare as a family as part of our homeschool experience.) Mary Ann Shaffer is clearly a fellow book lover. It is all the more poignant because Mary Ann Shaffer was ill during the writing and had to call in her niece , Annie Barrows, to help her finish the book, knowing that it would be her only published novel.

In her afterword, Annie Barrows writes: “This profusion of questions, exclamations, and tales is the new version of the Society. Its members are spread all over the world, but they are joined by their love of books, of talking about books, and of their fellow readers. We are transformed – magically – into the the literary society each time we pass a book along, each time we ask a question about it, each time we say, ‘If you liked that, I bet you’d like this.’ Whenever we are willing to be delighted and share our delight, as Mary Ann did, we are part of the ongoing story of The Guernsey Liteary and Potato Peel Pie Society.” I am glad to be able to offer my small contribution.

 

Annus Horribilis

Previously on the Prairie…

2014 was not awful, it wasn’t the happiest year – I didn’t have the life I wanted, and I was very lonely and pissed off with our bad landlord (the last in a long line of bad landlords who nrefused to fix broken plumbing).

At the end of 2013 we had moved house, out of a fire into a frying pan it seemed. It wasn’t the best move, but previous to that we had lived three years in a rental that had *so much* wrong with it, that it shouldn’t have been legal, BUT it was a bungalow (which, being on one level, was perfect), it was in THE most beautiful location, with views of fields in every direction, a village pond opposite, and a regular procession of visiting ducks, sheep and turkeys. So when we moved, it wasn’t a clear 100% improvement – it was a compromise. I miss the ducks and the beautiful views, but I don’t miss the disgusting brown water etc. The new house was pretty good, apart from the not hot water (honestly, not sure which was worse.)

2015

I made the stupid mistake of reading a horoscope (or was it a ‘prophecy’?) in January which said I would soon have access to a completely new social support network. Well, it hasn’t happened yet.

But then, I could not have *imagined* the idea that we would be evicted in 2015 from that same house after barely one year as good, regular rent-paying tenants. And again, although every idiot thinks that if I’m not happy I must be a ‘glass half empty’ kind of girl, because, d’oh, you live near the sea, within walking distance of the supermarket, what more could you freakin want?

We have been housed in a totally unsuitable three-storey house, with a moronic design – kitchen and single bedroom on the ground floor, living room and single room on the middle floor, and double bedroom and bathroom on the top floor. There is no question whatsoever in my mind that this is one of the reasons why I have become so ill since we moved. I am now largely confined to one floor, largely unable to leave the house, effectively housebound/ bedbound where a year ago I was able to be fairly active.

Add to that the fact that there is no garden for the children, just a completely unsuitable yard not big enough for any practical purpose, horrible neighbours, my marriage sucks, an ongoing dusty, dirty, dangerous building site which makes cleaning nigh on impossible, and still, 9 months later – because we are poorer almost than we have ever been, living so ‘hand to mouth’ at the moment that we can’t do Christmas *at all* (if money doesn’t come in soon, we may need to go to the Food Bank for our Christmas groceries) – we have no floor coverings, and I can’t tell you just how depressing that is.

It hasn’t been my Annus most Horribilis actually. 2010 or 2011 would probably be very strong contenders. But I am not sure I have ever been more miserable.

Quite apart from my ill health which is severely limiting me right now, choices become few and far between when you have no money. I have cancelled every single outgoing that I could think of. So although I have been mulling around in my mind what ‘resolutions’ I can make for 2016, I don’t know how much is within my control to change. That is by far the worst thing – the fact that I feel completely powerless.

I’ll try and think of something positive to say next time.

What are the chances that 2016 will be our Annus Mirabilis, do you suppose? I think we deserve one.