Tag Archives: cfsME

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/

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.

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.

What’s it all about? #DreamWeirdness

I discovered the other day that intense and strange dreams are actually a recognised symptom of ME, something to do with hyperventilation because the oxygen doesn’t get to our cells properly. Anyway, that may explain why my dreams are always so vivid, and so memorable (to me anyway).

In my dream, we let ourselves sneakily into our wealthy friends, Derek & Jane’s massive house (not the house they really in but rather some kind of classic mansion, with oak panelling everywhere) this would be the perfect size for us, I remarked.

Derek & Jane turn up unexpectedly and are shocked to see us there, and we tell them that we are there to meet Tom (their eldest son). They rush off, believing our story, taking some other wealthy people’s children to swimming lessons at a private pool. Everything seems to look like 1930s, something out of a Poirot episode. The swimmers are in special life-saving costumes.

I went in a downstairs toilet, there was a big dog lying with its face under a stool or something. It had such long, red fur I thought it was a girl. It’s asleep and doesn’t stir.

Later, I am wandering round a bigger building, perhaps a school, attached to the house. People are milling around. I see someone I recognise and realise I know her from a scrapbooking group, but then I realise it can’t be that, because the scrapbooking group was in the city. it must be something else like that. We talk and walk together, but then I suddenly realise I am completely naked!

I run back to the house looking for the bathroom or somewhere where I can find clothes or something to cover myself. There are people there! Have I gone in the wrong house? People I don’t know, cooking in the kitchen. I panic when suddenly I see my friend Nathalie who pulls me into another room (to protect my modesty!) She tells me it will be alright and that the people cooking would like my help.

We have dinner, the other people have gone, and I look for a sink to wash the dishes. There are sinks everywhere! But they’re all full of strange things. I finally find an empty sink when somebody comes in the front door, a lady with a little boy. She goes in to the toilet without stopping to speak to us.

Now (as is the way in dreams) it has changed to John and Gay’s house (but not the house I remember). I tell the lady they are out and then as she turns I realise she is heavily pregnant. I ask her when she is due, and she says soon, and then realises she is going in to labour. I wave over the neighbours. I say the boy can’t stay with us as he doesn’t know us. She is in a panic, and I think to myself that her anxiety reminds me of me, but the neighbours arrange everything and take them away.

Why? What’s it all about? Lots of my dreams feature pregnancy and babies, random people I know, houses I know. And peculiarly, sinks, toilets and bathrooms feature heavily.

Is it all nonsense? Do I need therapy?!

ME Merry-go-round

I’ve been waiting, since my Zombie Apocalypse, for something good, or significant, or interesting, or funny to share.

That’s not to say that nothing of import has happened – I had planned to write after the Paris attacks. When they happened, we were at a metal gig ourselves and even before I knew what had been attacked, I remember thinking that Islamists would imagine that what we were doing was somehow sinful, simply because they don’t understand it and can’t distinguish good from evil.

But I didn’t write because I didn’t have the energy to express the sorrow and anger I felt.

I haven’t had much energy for anything recently. I have had a basically unexplained illness since 2003, and since 2013 they have been calling it ME (or CFS, depending who you speak to) and now Fibromyalgia has been added to my list of diagnoses.

But my relapse has been so hard and so fast and so un-relenting this time that I have started wondering and asking questions about possible alternative explanations, so I have begun to do the rounds of neurologists and rheumalogists etc. trying to rule out MS, RA or Lupus.

Unfortunately, none of these specialists so far want to get involved with the ME/cfs/Fibro diagnosis. You shouldn’t have to bang your head up against a big brick wall when you’re ill but that seems to be the way of things in the NHS, particularly with this label.

When I do have more energy, I might write a bit about what is like to live with this illness. Mostly I just rant a little on twitter about the ‘symptom roulette’ that we experience.

But something I may not have mentioned before is guilt – there are so, so many ways in which I feel I am failing, and while I know it isn’t my fault, I am made to feel as though I am somehow choosing this – choosing to live in pain, unable to do the least work (yesterday, since we had visitors, I did my best to tidy, I cooked, washed up, and today I am a wreck, and can only *hope* the weekend is long enough to recover).

I hate living in a dirty, untidy house, and there is literally nothing I can do about it.

There’s a lot about the world, and my life, that feels out of control. My dreams have been weirder and more disturbing than normal, even for me. Music, and specifically Rock and Heavy Metal, is one of the few things that make me really happy in amongst all the mess and pain and sorrow.

So as much pain I am in, and as much as I feel wrecked beyond anything the word ‘fatigue’ can describe, the one thing I make sure I get out to is live music. I can’t drive there, and I usually can’t stand up for long. But if needs be, I’ll get taken in on a stretcher. Music, and art, makes life worth living 🙂

May 12th International ME Awareness Day

I had planned to write my own post and draw together good and helpful links, posts and videos for International ME Awareness Day, but I seem to be having a bit of a bad patch and I have already run out of ‘spoons’ today.

So in the meantime, I am sure you will enjoy this post with beautiful paintings depitcting some of the various stages of ME/cfs.

http://glutenfreeadventuresandme.co.uk/2015/05/12/the-corrupted-part-1/

Grumbles

Just a quick (ok less quick as it turns out) grumble. I’m still clearing out our old house and trying to clean the darn thing.

We have had the de-humidifier going non-stop for three weeks, and some of the more disgusting black mold has disappeared, but I just feel incensed that we have had to live in these awful places, and that our scumbag landlord would add insult to repeated injury by turfing us out on our ear for profit.

I sat in the garden yesterday, looking at the beautiful view of fields and the sea, and just wept thinking about the place we are moving to, with a sorry excuse for a tiny garden with 6 foot high fences and a view of a shed. Ok, we’re escaping the mold, and our tenancy should be safer now as it’s no longer private renting, but it’s not a clear improvement by any means.

My mum keeps calling to say first one day that she’s desperately unhappy and can’t cope with living alone and wants to come and live with us (so can we get the ‘spare’ room ready for her), and then the next day that she doesn’t want to leave London and would rather live near my brother. I’m sure she can’t help it, but it’s relentless and feels like emotional torture.

Also, about three weeks ago I wrote to the Church hierarchy with an update confirming that, after my year of waiting, I was still interested in ordination. I still have yet to receive any kind of acknowledgement at all despite specifically requesting one. In the meantime, I sent details of an online course to the same person that I thought might be interesting. Bearing in mind that I wasn’t asking for the church to pay for the course, the fact that I received a very terse response “NO” within five minutes felt like a big slap in the face with a wet fish.

Frankly, I’m no longer sure that I want to be connected with an organisation that treats people so rudely.

And then finally, and no doubt due to the amount of stress I’ve been under, I’m experiencing what feels like the beginning of another relapse – all my lymph nodes are swollen, my throat is sore, my head, back, neck and spine are tender and my arms and legs are achy and weak, so I am having to take it easy and move slowly to hopefully ward it off. Last night I went to bed around 9pm, slept round the clock, and woke up with a migraine. The washing, and washing up are piling up around me and I can’t do anything about it.

Autumn Update

autumn

When all my activities finished at the end of term before the summer holidays, I was relieved because I knew I had been overdoing things. But what I hadn’t realised was that when the adrenaline (or whatever) stopped, I would completely crash.

I spend a lot of time determinedly denying that what I have is M.E. I have eight pages of notes to bash my GP with – there are so many other things that I should be tested for, that should be ruled out before they give up and diagnose M.E., so many things they should try, so many things they could offer before they tell me that “there’s nothing we can do”. But this thing of feeling terrible when you stop, this ‘post-exertional malaise’ is typical of M.E.

The whole summer was essentially ruined because I was too ill to go out – despite living a few minutes’ drive from the beach, I wasn’t able to get there. I wasn’t even able to sit out in the garden. I haven’t been this ill for a long, long time.

So I haven’t resumed Scouts or Guides, and I have given up Boys/ Girls Brigade, with no plans to take it up again any time soon. I had another reason for dropping Scouts and Guides – after nearly two years of volunteering, neither of them had bothered to do a CRB check (or DBS as I think they’re called now). Neither had they sent me for any training, despite me repeatedly asking for it and indicating that I was serious and wanted to be a uniformed officer. In fact, at one stage I was asked to take over the section I was working in, and I indicated that I would be interested to do it, with help, but the help wasn’t available.

It seemed to be the case that it was completely up to the volunteer to ensure that they have the correct training and certification, and nobody seemed bothered. I wasn’t prepared to carry on in the position where, if something when wrong, I could be liable. That really isn’t acceptable.

There were a lot of things about Scouts in particular that opened my eyes to bad practice and some of the inappropriate people involved in it, and I have to say that I would be very, very reluctant to put any young children of mine in a youth group that I hadn’t investigated thoroughly, or that I could perhaps be personally involved with. The willingness of parents to leave very young children with people who are really not at all suited to be working with children amazed me. The stress of that is something that I am very happy to be leaving behind.

I have had approximately ten weeks rest now, and although I’m not really feeling better, I am hopeful that my GP is now willing to offer me something since he has discovered that my blood pressure has shot up suddenly (although he doesn’t know why – he likes to blame it on my weight, but I haven’t put any on in the last year, and this time last year it was basically perfect). I have no idea why, but hopefully some medication might start to make me feel more human again.

Unfortunately, I am cross that in all that time, being unable to go to church, I haven’t had a single visit or even a phone call. I have been getting more and more cross about that as the weeks have gone on. I assumed that they knew how ill I was because my eldest son is a bell-ringer and sees them every week. But he told me last week that my husband told them I was “fine”. Because apparently, from experience, this is how he deals with things. They have to be private, nobody else is to know, in case we worry people. Please.

Really, am I an awful person for wanting to tell people I am ill and need help? Should I be worrying, like he does, more about everybody else not worrying?!

Needless to say, I have become progressively more depressed and distressed over the last ten weeks. But part of that is to do with having too much time on my own to dwell on all the trauma and distress from the events of the last few years. While I was busy, I thought I was moving on to a new normal. But now I am right back in that dark place of grief.

I have continued to wonder about adoption. One of my online contacts had got to the point of being approved by panel, but then decided that she couldn’t go ahead. It’s huge. Taking on a traumatised child – even a baby – is so much more fraught with difficulty than having a baby yourself. If I manage to get my health to a point where I could consider going ahead, do I have the emotional strength to cope?

Additionally I have had the stress of having to make a formal complaint about my boy’s paediatric diabetes team. I won’t bore you with the details right now, but suffice to say that we have elected to transfer hospitals in an effort to secure a better service. But this has been stressful and upsetting to say the least. But I have done it.

I discovered today that my old friend’s wife, the one who made a fuss a few months ago that I hadn’t enthused about her pregnancy, has blocked me on both my accounts. I don’t care much about her to be quite brutally honest. She is a shallow, selfish character who would never even want to bother trying to see somebody else’s pain or point of view. I felt like sending him an angry, ranting message or unfriending / blocking him in retaliation. Instead, I just sent him a message telling him that I am sad.

When you have lost babies, or have a sick child, or you have to deal with ill health, you are going to have some level of underlying sadness. I would love to just get happy. I want to live, I want a full life. I just wish I knew how.

My next post will be happy, I promise.

ME: An Alternative View

The following website belongs to a friend of mine, who has an alternative and controversial view on what ME really is:

http://aboutmy.me/

I think that in my case, this probably applies, and I am working on the basis that thyroid and adrenal issues have not been adequately or thoroughly investigated by my doctors.

But I think that the thyroid and adrenal connection is only one part of the puzzle – it doesn’t fit the profiles of the outbreaks of mass ME such as the Royal Free case, in which dozens of patients and nurses came down with the same illness.

But it is definitely an issue that must be properly investigated before ME can be legitimately diagnosed.