Its now Jan 2013 and not much has changed. In terms of my day to day life and CFS.
I actually wonder if my health has got a bit worse over the last 2 years. But its hard for me to be objective and measure this clearly.
My head is filled up thinking about work (property) issues and problems. And household problems. And business finances. And practical problems of so many things I need to do, but haven’t been able to :
eg :
get my hair cut (over 12 months now), visit to dentist (maybe over 2 years), go for breast screening, was due 3 years ago. (have had 3 appointments but wasn’t well enough for any of them).
With all this going on, plus my CFS neurological smptoms of “brain fog” and the “racing brain” (to name just two), this is probably why I haven’t got the ability to tell.
But I am getting more severe and longer-lasting symptoms some weeks. And it seems to take me longer to recover from my “crashes” each time.
People with CFS and ME will know what I mean by crashes. But for the benefit of others – it is more commonly called post exertional fatigue or post exertional exhaustion. And its nothing like the natural tiredness, or exhaustion, people can feel after a long hard day. Or even after doing something out of the ordinary which been exhausting. Like a marathon run. This tiredness/fatigue/exhaustion is entirely natural and a normal healthy person usually just needs adequate rest to recover from it.
But with CFS and ME it is so much worse.
The level of exhaustion, and severity of other symptoms, can be very bad indeed. And often totally out of all proportion to the amount of time and energy the person had used. On whatever they were doing. And to make it even harder to control – it can fluctuate from day to day, week to week, etc. (Making planning things often a real challenge, if not impossible at times.)
An example from my day to day life :
I find that I’m often exhausted now after having a shower and may need hours to recover. Not every time but too often.
By “exhausted” I mean – I am too weak and out of breath to be able to do much other than rest. My arms are sore and weak with the effort taken holding them up long enough to shampoo my hair. And my chest is pounding and heart racing. I took my pulse after a shower a while ago – it was 141. This is maybe 2 to 2.5 x the average rate of a fitter person ?
Yet it was a simple, short and non-stressful activity, done slowly under no pressure.
This makes me wonder how high my heart rate goes when I feel under any major stress.
eg. In November 2012 when relations turned sour with a firm of tradesmen I had used for lots of work in my properties. And spent much money with them. One of the 2 partners turned into a total scumbag and actually threatened voilence against the properties. Saying he would “rip the fittings out of all of them”. Or words similar. And this in writing to me by text message. . . Then a 2nd text message to me confirming it was “a promise, not a threat” . Unbelievable.
Just to add here : I had an ongoing account with this firm and faithfully paid them every month as had been agreed. So I wasn’t in default to them in any way. But I had been raising my dissatisfaction with some of their work, and various broken promises with time-scales etc.
And they just turned nasty.
That week I was in bed almost the entire time – and my worst symptom was feeling like an elephant was sitting on my chest. That heavy, weighty feeling.
Just awful.
But I still had to deal with the situation as best I could – from my bed. And not very well admittedly.
Its all over now and these people are out of my life.
But I hate to think that this could have worsened my condition. As I was experiencing so many bad emotions that week – fear, anger, disbelief, frustration, despair. But anger more than anything.
However they say what doesn’t kill you makes you stronger.
I certainly hope so . . . !
2012 in review
January 12, 2013
The WordPress.com stats helper monkeys prepared a 2012 annual report for this blog.
Here’s an excerpt:
600 people reached the top of Mt. Everest in 2012. This blog got about 2,700 views in 2012. If every person who reached the top of Mt. Everest viewed this blog, it would have taken 5 years to get that many views.
The Secret Files – more info
December 5, 2012
Uncategorized internet, ME/CFS, medical professionals, mistreatment, research, secret files 3 Comments
I have reaslised that I must add some info here on how to actually obtain these files – as have had a few requests.
As I mentioned in the main post :
All the work in obtaining these files, and with as much info as possible re-instated into them, is all down to the hard work of Valerie Eliot Smith. Or @SnakeTempleGirl on Twitter.
Her Blog is at : http://www.valerieeliotsmith.com
Her post about these files gives the info needed to obtain them online. It is quite easy to do if a bit slow, and is free of charge.
The files aren’t secret as such anymore – but hadn’t exactly been made very public either. Plus a lot of info contained had been removed (or redacted) and it is because of Valerie’s hard work that most of this got re-instated into the files.
Hope this is of help to anyone wanting to view them.
I hope to read them very soon – but realistically will probably not be until the weekend. I think I will need to be relaxed, calm and collected – well before I start reading anyway . . . !
The Secret CFS/ME Files
November 30, 2012
Uncategorized anger, disbelief, GPs, ignorance, landlady, ME/CFS, medical professionals, mistreatment, neglect, research, secret files, support 5 Comments
The Secret ME/CFS Files
File No : FD/23/4553 from the Medical Research Council (MRC)
This week or weekend I am planning to settle down and read this file. Probably with a cup of tea – although given the contents a large gin & tonic might be better.
To explain – this will be no pleasant read and have no doubt it will make me very angry. But there is no question at all that I am going to read it.
All 158 pages of it.
This is a file from the Medical Research Council (MRC) on CFS/ME. It had been filed away in the UK National Archives in 1997. And wasn’t due to be released until 2071.
The contents seemingly go back as far as 20 years.
NB. The lady who has obviously done a massive amount of work bringing this to the public attention is :
Valerie Eliot Smith ( @SnakeTempleGirl on Twitter )
She is a long-term sufferer of ME/CFS and describes herself in her twitter profile as an “angry bird”. And how well I understand that anger. It is the Number 1 reason I started this Blog.
Why am I angry ?
1) Because of the poor treatment I have had from GPs since maybe the late 1980s. So far back it is hard to be sure now. Not angry at the fact that I wasn’t cured – but more the way I have been treated all these years. With contempt, bullying, disbelief (obvious but unspoken), no respect, disinterest, irritation, silence, blank looks, etc etc etc.
Left to rot would basically sum it up.
Take anti-depressants and get on with it.
NB. I should add here that 2 of the 3 GPs I have seen over the years I’m sure are nice people & good GPs when it comes to other problems/conditions – ie. not CFS or ME related. (In fact they have been quite nice with a few other things over the years.) The contempt and bullying I mention was from the 1st one and goes back a long time now.
2) Secondly because of the way people with CFS or ME are often treated by the general public.
This can include employers, work colleagues, acquaintances, relatives – and unfortunately sometimes even friends and family. We are desperate to talk about it to people important to us – not because we want sympathy or attention. But because we want them to understand how bad this condition/illness can be and how much it limits us at times. All we want is understanding and hopefully some allowances made for us – so that the friendship can continue even when we are limited.
But sadly, sufferers sometimes experience boredom, impatience, no empathy or understanding at all, intolerance, disbelief and unpleasantness.
Plus many marriages have broken down, with partners leaving. I read somewhere it was estimated 50% of marriages break down when one partner has CFS or ME. I wasn’t shocked – only surprised it wasn’t more. The stress and strain can be terrible, intolerable even, on both people. Especially over the long term.
My own marriage almost didn’t survive and came very close to breaking down in January this year. After being together since 1991. Many reasons. But I would say most caused by me having CFS such a long time. Directly and indirectly.
The sheer stress of everything over so many years, without any help (for either of us) almost finished us off. We are still struggling. Not so much with our marriage but with almost everything else in our life ! It has been very hard indeed the last few years. But, after a 9 month spell apart, we are now living together again.
NB. How does this relate to these medical files you may be wondering ?
Well although there is really no excuse for people treating us poorly – I am sure the attitude of the medical profession ( ie. the experts) has not helped things one bit.
3) The sheer injustice of it all.
Being made to feel I was lazy or work-shy by the medical profession. And sometimes others. Always indirectly of course. Never stated outright – therefore denying me the opportunity to challenge it and put the record straight.
I worked full-time from 1977 until 1999, then part-time 1999 – 2003. And studied hard to get professional qualifications in Insurance and in Financial Services : A.C.I.I and M.L.I.A (Dip) and FPC (Financial Planning Certificate).
In the early 1980’s I worked in numerous 2nd jobs in pubs 3 or 4 nights a week – on top of my full-time job. This was to save up the deposit to buy my 1st flat (and cover all the costs, furniture, fees, etc). I was in my early 20s at the time and most of my friends were enjoying going out, socialising, etc. But I wanted to do this and just focussed on it. It wasn’t easy and I did it over a period of a few years. Until around 1986.
Then to be treated as lazy, or basically “worthless” by the medical profession – how could I fail to be angry ?
The lack of almost any medical help, or any type of help. No “Care Pathways” or “Management Guidance” offered to me at all. And being told that I wouldn’t get any financial help from the State as I would not qualify with CFS. My GP did not help me at all. In fact I think the only time my previous GP agreed to sign me off work (for 3 or 4 weeks) was when both my Mum and Dad were seriously ill in hospital at the same time. My Dad was in hospital for a month and had a lot of health problems. Then my Mum had a heart attack at the same time – and ended in in the same hospital (Glasgow Royal Infirmary) for 2 weeks.
So I maybe shouldn’t complain too much . . . Allowed time off work for 4 weeks. This was maybe 1987.
In late 2002/03 my GP then did sign me off work, and eventually diagnosed my CFS. My Mum was terminally ill at that time, and I was struggling very much even before that.
But in order to get this (signed off work I mean for a few weeks ) – my husband actually had to come to the Doctors Surgery with me. To help me talk to her.
NB. I want to make 2 important points here :
a) I am not angry because I wanted to have lots of time off work. Then give it up forever and live on State Benefits! But it would have helped me so much if I had been treated seriously and shown some respect by GPs. Because I am certain that if people are forced into struggling on for a long period of years (as I was) then the illness/condition becomes more ingrained. And so much more difficult to get rid of.
b) With regard to state financial help – I wouldn’t have wanted, asked or chosen to live on benefits. But I fully understand that many have to do so because they have no choice, and are own their own. But to have received some financial help would have been good. I mean people get child benefit (previously totally un-means tested). And having children is a choice – having CFS or ME isn’t.
4) Now a Landlady – since 2004.
This is hard too and is eating up most of my life just now. Because my CFS has got worse over the last few years. So makes it harder than it should be.
I “got into Property” in 2004 as was no longer employable. It had to be something where I wasn’t answerable to anyone and could do my own hours.
I took a big risk (financially) to start this up. I didn’t have any money other than some savings. Never had any inheritances, or lottery wins.
I just borrowed and kept on borrowing . . . ! Including re-mortgaging the house – with my husband’s agreement of course.
It was designed to be long-term – and will be very long-term now. Keeping it all afloat throughout the last few years (since the credit crunch and recession started in 2008) must be one of the hardest things I have ever done.
Unlike GPs and other medical people I have no guaranteed salary at the end of each month. Sometimes a loss. And I just have to work the hours it takes.
NB. My point here is not meant to be “Oh woe is me” or “I never knew it would be this hard” . . . etc etc. It is simply that I am working very hard – but am still treated dismissively at my GP surgery. It seems that no matter what you do, or say, if you have CFS or ME noted on your files – you are deemed not worth bothering with.
But : why do I want to read this file, if it is going to make me even more angry ?
Because I have to.
I have to see the contents in black and white for myself.
I feel it will confirm I have not been over-sensitive all these years. In feeling I have been badly treated by people who are highly paid professionals. Who I had turned to and had relied upon to help me.
And it will prove that I have not been alone. And have a very justifiable right to be angry.
The Chaos Of My House
October 31, 2012
Uncategorized brain fog, housework, marriage, My Life Today, pussycats Leave a comment
The Chaos Of My Life
Right now all around me feels chaotic so thought I’d write a post about it – as it may calm my head down.
My work is totally chaotic and has been for ages now as I am struggling so much to do any of it. The harder I try the worse my CFS symptoms get. Over the last week or so I can hardly even use my laptop. This is severely restricting what I can do as rely on email very much. Just looking at the screen (no matter how I alter brightness etc) is giving me almost instant headaches some days. Also use my mobile phone (an old style one) for text messages to communicate a lot. But this isn’t great either – as it is feels like shining a bright torch into my face . Not to mention that I go thru my pay as you go credit at a lightening rate. (And not everyone does text messages anyway.)
I have probably already mentioned how difficult phone calls can be with CFS – when the brain fog or racing brain kicks in. Not to mention everything else.
In fact – just actually thinking (about anything work wise) is giving me such bad headaches and exhaustion now.
So its not making for an easy life : if I can hardly use my laptop, mobile phone or even think . . .
But I know there is a funny side to this. I did chuckle to myself this morning as the thought of trying to explain to a angry employer (if I had one) that I was too ill to come into work because thinking was too much for me ! I don’t imagine that would be well received or understood – do you ?
But I wanted to make this post about non-work things.
Some other things that feel chaotic right now are :
a) The House is dreadful mess.
Cluttered with stuff everywhere and nothing in a logical place. To explain, Hubby moved back again 6 weeks ago. (Both happy about this – may do a separate post later.) He had been living in one of the flats that is normally rented out near Shawlands. For 9 months. So various items of furniture and loads of belongings are now here – but most have still to be merged back into the house. At the moment they are all over the place. Things keep getting lost or misplaced everywhere. And neither of us have had the time or energy to sort it all out properly.
b) My Office is a mess too.
Same reason as above – on top of my ever growing backlog of work and problems. Sitting at my desk typing this I can see on the floor and table ahead of me : surplus pillows, various lamps, a mirror, a painting, 6 mini boxes filled with stuff, lots of bags containing Xmas gift bags that were taken out a cupboard to let other stuff in . . . etc etc.
A setting that doesn’t make for clear thinking at all.
c) An over-flowing laundry room.
I am lucky to have a decent amount of space at home – but not much storage. Have 2 downstairs cupboards but the larger one is used to house the washing machine and washing baskets. At the moment it looks like a very out of control laundry. The 2 washing baskets have doubled to 4. Hubby has 1 and it is fairly empty – he is good with his. The other 3 are for my stuff, and towels and bedding – and they are all totally overflowing. Its getting to the stage that almost every towel and item of bedding in the house needs washing. Not to mention most of my own clothes.
Why – because I haven’t enough time or energy. The usual issue.
d) We are lucky to have a 2nd TV room – but its a muddle too.
After 21 years together and 9 months apart (recently) Hubby and I realise that we must have our own separate time as well as together time. So he will use this room at times. But right now the room is a shambles. So much stuff everywhere – I try not to even look into it when I pass to go to kitchen. The TV and DVD player aren’t connected up yet and there are wires, rolls of cable, remote controls etc all over the floor. And it has been like this for 6 weeks. But he hasn’t had time to sort out yet. Even the switch for the cable modem I need to put on (to use broadband) is in this room underneath a table. So I have to crawl under every day to switch on and off.
Not ideal . . .
e) The only good bedroom is unusable.
The central heating system and boiler are ancient – over 40 years old. We have had quotes but too expensive to replace it. It still works and works well in downstairs rooms. But the heating now struggles to get to some rooms upstairs. In particular the main bedroom which I love because of its size and brightness. And its bay windows – something about bay windows I find calming. But this room is now (for me) a “no go” area as simply too cold. And will get much colder yet as winter approaches. (Everything has been tried, adjustments, an extra pump, new radiators etc – but the ancient system simply isn’t coping.)
So we now use a much smaller bedroom at the back of the house which heats up well (so far). And realise am lucky to have this option.
But its not ideal as quite small. And gets a very poor light – even on a bright sunny day. It has a lovely view of the side of next door’s house – a brick wall ! And its crammed with far too much stuff at the moment.
f) Finally – and to cap it all – we now have fleas from a visiting pussy cat !
Yeh Gods . . .
We thought we were imagining it at first – as haven’t actually seen any. Do you actually see fleas . . . ? I have no idea . And certainly couldn’t see any on the pussycat herself – who is a very fluffy girl cat with a massive tail. Simply gorgeous and irresistible. How could I turn a pussy like that away . . . when she meows at the kitchen door for attention ? And cats are always washing and grooming their fur (very proud animals) so we didn’t suspect anything at all.
But the lovely ankle bites can no longer be ignored. So that’s something else to deal with.
Oh well – I wouldn’t like to have nothing to think about . . .
Aaaaargh .
Undernote :
I changed the name of this post as the previous one gave the impression of things being more dire than they are. Its not my total life thats in chaos – just some parts of it !
Too much thinking ?
October 27, 2012
Uncategorized balance, David Mickel, Mickel Therapy, PEM, symptoms, twitter 1 Comment
Have realised this week I need to be more careful with what I do. And not to get so carried away with things. If I am enjoying something and find it interesting and worthwhile – I tend to kind of throw myself into it and lose all track of time. And this can (and often will) make my CFS symptoms worse. Except I don’t realise this while it is happening or building up – but only when it is too late. If that makes sense to anyone ? That awful post-exertional fatigue – except that “fatigue” is a very lame description of how it feels. Plus very nasty headaches this week with eye strain and over-sensitivity to bright lights, noise etc. I got to the stage I couldn’t even tolerate watching TV or reading a book or paper.
Not ideal.
This week I have spent far too much time at my desk using my laptop – again.
I have to do this with my work stuff and that can’t usually be avoided. But have also being spending too much time on twitter. And thinking up stuff my for blog. Actually that gives the impression I am struggling to find stuff to use – but its the opposite problem. My head is full of over 20 years worth of stuff I want to get out – the problem is deciding what to write about first. So I end up spending too much time thinking and mulling over several options and ideas at once. Then end up too tired or headachey to write anything at all !
Overthinking stuff is maybe something I have always been prone to doing. In fact when I was doing Mickel Therapy back in 2008-09 David Mickel once said to me that his biggest challenge (ie. read problem !) was to get me to stop thinking so much. You see Mickel Therapy although decribed as a “talking treatment” is NOT a phsycological treatment. It has nothing at all to do with positive thinking, changing your thought processes, analysing, cognitive behavioral therapy (CBT), etc etc. (Just decided I would add this as I know there will by many sceptics out there – which is a pity.)
Back to my point :
Although I really enjoy twitter as there is a whole world of interesting people on it, and subjects that interest me – I have to accept this involves too much time staring at my laptop screen. And I will keep doing this blog – but must try to get into a better routine with it. Just decide on an item and write about it. Don’t over-think it and don’t worry about trying to make my writing perfect either. It is just a blog after all – not a classic novel. Both these things involve me spending too much time thinking, and over-stimulating my brain. Twitter of course is fatal for this – so many people and so many subjects of interest on it. Interesting to me anyway. But although my head feels it is enjoying this – I have to accept that sometimes my body does not, ie, the bad CFS symptoms this week.
Not a very good post I know – more a note to myself.
Do any others with CFS or ME feel their symptoms get worse if spend too much time thinking ? Or over-stimulating the brain in some way ?
Feeling Sorry For Myself Today !
October 12, 2012
Uncategorized despair, fear, My Life Today, people, severe ME, struggle, understanding, work 1 Comment
Ok I confess I was feeling a bit sorry for myself today. But its allowed at times isn’t it ?
Reasons :
1) Now Friday night and I haven’t been outside the house since last Sunday. (Actually that is just 5 days which is better than some weeks. But still not great.)
2) I am managing to work (for myself) but doing it poorly. Backlog of work just gets bigger and bigger !
3) My life for such a long time now has been :
Work – too much for me – unwell – crash – rest – recover a bit
Then start all over again.
4) I just cannot get a proper break to allow myself to get better – or work towards it. If I stop for 1 or 2 days (when CFS forces me to) the work backlog and problems get worse. And makes it even harder when I restart a day or two later. I don’t want to keep going on about this as I know I’ve mentioned it before – but it feels unresolvable just now.
5) Have so little energy or time left over to do anything nice or fun – apart from work, work, work.
Not the life I would have chosen.
5) I was guilty of dwelling today on how many days of my life have been “lost” because of this bloody CFS.
By lost – I don’t mean days I haven’t got out the house. These are very common because I work from home, then have no energy left. I mean the days (like today) when most of it has been spent being unable to do almost anything (even work). And have been in and out of bed most of the time. (Still in my PJs now.)
6) Often feel the outside world has no idea what my life is like.
For instance neighbours that I haven’t managed to chat with properly for ages probably think I’m a bit unsociable. Some friends I’m sure have taken offence that I haven’t been in contact for ages. Etc etc
And my husband tends to play it down if people ask. He will say things like “she gets a bit tired” or “she tries her best”. Neither of course give any inkling of the reality.
NB. This is a difficult area for me and always has been.
I don’t know if I can yet explain it properly. You see its not that I am looking for attention or sympathy. But I often feel that hardly anyone knows how hard I am trying – and how hard it is day to day. And I am so sensitive at anyone thinking I’m lazy or not trying.
7) Sometimes I feel scared I could slip into a “severe CFS” state and won’t be able to pull myself back. If things in my life don’t improve and the day to day stress lifts a bit. This can’t happen on its own I know – and I am trying so hard and so many things. But these take up even more energy.
8) I keep saying “I will get there” and “I will keep going” . But some days I don‘t believe myself.
9) I was also dwelling (too much) on the way so many people treat you if you have CFS or ME. Not everyone by any means – but so many people.
Hubby once said to me “Anne, people are bored, don’t understand and are not interested”.
A young girl (young teens) with ME put it very simply in an article I read recently. She said “people have not been very nice to me since I got ME”.
Both of these sum it up at times . . . .
CBT & GET – my experience
October 11, 2012
Uncategorized CBT, emotions, exercise, GET, psychology, treatments 1 Comment
CBT & GET – My Experience
To follow up on the recent post on CBT and GET – I thought I would share my experiences of this. I imagine people’s experiences will vary widely.
These 2 treatments are still the main recommended treatments today – here in the UK and also in the US (as I learned last week).
My understanding is that they have helped very few people with CFS or ME – and many have reported that GET actually made them worse.
CBT = Cognitive Behavioural Therapy
GET = Graded Exercise Therapy
CBT :
This is a talking psychological treatment with a therapist, counsellor, psychologist or psychiatrist.
In my case it was with a clinical psychologist in Glasgow in 2004. There was a long waiting list for this – I waited around 9 months.
Well we now know that this does not work for CFS or ME – as it is a psychological treatment aimed at curing a physical condition.
To be honest, my experience of it was reasonable all the same. Compared to many other stories I have heard.
The psychologist was very nice and easy to talk to. He put no pressure on me to feel I should be trying harder and seeking another full-time job. By 2003 my health had forced me to resign from 3 jobs. One after 20 years, next after 1 year, and final one (part-time) after 4 years. And I had left with nothing at all financially – even after 20 years in the main job. So I was feeling a bit of a failure without doubt at that time.
Being able to talk and being listened to and encouraged did help me a lot on an emotional level. (Especially after what felt like brutal treatment and lack of help from a previous GP over more than 12 years.)
However it was no help at all with my CFS. It did nothing to cure it – impossible as we now know. And nothing much to improve it either.
GET :
My experience of this was just silly and a total waste of time.
I was referred to an exercise therapist who was based in a sports centre in Glasgow south-side in March 2003.
The first thing I remember that seemed stupid was I had to fill out a questionnaire – but it was full of questions about your mood, etc. Whereas I had been expecting questions about everyday stuff I found hard – eg. Housework. Or physical activities. By the end of the questionnaire my mood had certainly gone downhill – it had made me feel a bit stressed. As the questions bore no relation to the problems I was having day to day.
Next (after a short chat with the therapist) I was set exercise targets for a month. A combination of outdoor walks and using a sky walker (or elliptical trainer) I had at home. I was to do these every day. And I had activity charts to record my progress – with space for ratings and any comments. The ratings ranged from 8 (very easy) to 15 (very hard & unable to speak).
For the 1st month my ratings were all 14-15. But with no comments. It got no easier – and by the end of the 6th month my ratings were all 15 and I had even added some 16s. Plus I had a lot of comments too by this stage, eg. Felt sick, felt dizzy, felt shaky, back sore after, etc. Basically it was making me worse – but I couldn’t see it at the time.
The therapist phoned me after the 1st month. I said Yes I was sticking to the targets but it was very hard and I wasn’t any better. She said something vague like “well never mind, just keep going . . .” And changed the arrangement so that I was to phone her after month 2 with my “progress”. I didn’t bother to phone her back as she didn’t seem very knowledgeable or helpful. And couldn’t answer any questions I had asked. (She was probably glad I didn’t phone back !)
But I did keep pushing on with it as has always been my way. Although very stupid in this case. Then eventually gave in and just stopped.
I do realise that I was very lucky that the GET didn’t push me into a severe relapse though – as has been the case with others. And I was also lucky that my therapist was fairly uninterested – as many others have been pushed on too far by over-zealous therapists.
My thoughts now :
GET should be abolished. And CBT only offered as a complimentary treatment.
CBT & GET used in US too
October 6, 2012
Uncategorized CBT, despair, exercise, GET, psychology, treatments, USA Leave a comment
CBT & GET
In my Reasons For Blog post I mentioned the treatment (or mistreatment) of people with CFS and ME has become a national and world-wide scandal. And it feels that almost every week something else happens to emphasise this.
2 things this week :
1) The #MEinsults timeline that took off on Twitter.
2) The CFS Advisory Committee meeting in the USA
I will just cover (2) in this post.
I didn’t know much about this until I saw a message on twitter. To explain :
The CFSAC are the Chronic Fatigue Syndrome Advisory Committee in the US. They provide advice and recommendations to HHS.gov (the Dept of Health and Human Services) on issues relating to CFS and ME.
They met a few days ago to listen to presentations and submissions from people involved with CFS & ME – including sufferers themselves (or their representatives). One of the recommendations made from a mother of a severely affected sufferer was that use of The Toolkit should be stopped with immediate effect.
I didn’t know what this was. Now I read it I see it is the recommended treatment and uses GET (graded exercise therapy) and CBT (cognitive behavioural therapy).
Just like the UK.
Unbelievably the AC have now decided to continue using the Toolkit despite the impassioned plea against it. Very depressing. There are millions of sufferers in the US and this means no new hope for them.
GET has been described as a type of torture for people who are very ill. For others it ranges from being no use at all to making their condition much worse. And even pushing them from a mild or moderate state (both still very bad) – into the much worse severe or very severe level. There seem to be very few people helped by it, if any. Yet it is still one of the two primary treatments in the UK and USA.
It is scandalous.
CBT is a psychological-based talking treatment – except that it does nothing to treat the condition and therefore has no chance of curing it. Or even improving it. But this is so obvious when it is a psychological treatment being used for a physical illness. And it is still the other of the two main treatments today.
The fact that the CFS Advisory Committee have ignored advice made to them just seems plain stupid. And will just cause further despair for so many.
Your Jaw Never Gets Tired 
#ME Insults on Twitter
October 21, 2012
Anne Raw Emotions bullying, comments, ignorance, invisible illness, society, things People Say, twitter, understanding 16 Comments
ME Insults
In my post of 6th Oct I mentioned that the poor treatment of people with CFS or ME was a scandal. And I had mentioned the ME Insults timeline on Twitter. A bit more about this now.
Twitter is marvellous for connecting with people worldwide on endless topics of interest.
Recently someone posted (tweeted) a message suggesting that people share any insults they had received since having ME or CFS. This then quickly expanded to include any comments which were – ignorant, hurtful, nasty, silly or just plain stupid. It was suggested that any replies included #MEinsults in them – so they would be recorded in a separate timeline in Twitter.
And it just took off.
Hundreds of people posted messages in just a day or two. What started off as a way of sharing and venting frustrations about how folk had been treated became more serious as all the posts (tweets) came thru. And were read. Seeing so many examples in black and white of how many people had been treated poorly (by GPs and/or friends, family, relatives) was incredibly shocking. None of it will be news to many people who have had CFS or ME – especially if over a long period of time. But seeing so many examples in writing somehow made it really hit home.
Some random examples from the #MEinsults timeline as follows :
“You have been unwell for far too long now. Its time my son found himself a new wife.”
(Has got to be one of the most cruel ones.)
“That shooter had something wrong with his head – and you have too.”
(Incredibly from a GP to his patient and referring to a gunman who had shot and killed several people in the city earlier that week.)
There is something wrong with your head.
(A variation of above but from a GP’s receptionist this time. Yes – the receptionist.)
“It doesn’t matter how bad it makes you feel – you must keep doing it.”
(My 1st GP’s view on keeping on exercising on top of working full-time while my health and symptoms got worse and worse.)
Do you not get bored in the house all day ?
We all get tired but we just have to push on.
Maybe you should try to be a bit more positive.
If you bring her back to school tomorrow then we will say no more about it.
(From a head-teacher to the mother of a severely affected pupil.)
I couldn’t be bothered with that.
I’m not the sort of person who would get that.
I don’t really believe in all that.
I don’t think he is really trying to get well.
You really shouldn’t keep him indoors so much – its not good for him.
(From a GP to the mother of a severely affected sufferer who had deteriorated to the extent he was almost bedridden.)
We don’t do home visits for fatigue here.
(A GP surgery refusing to visit a severely affected housebound sufferer.)
This is just a very brief selection.
Some thoughts :
Why is this still tolerated today ? And why do people feel it is ok to speak to sufferers like that ? And would these sort of comments would be made to people with cancer or multiple sclerosis ?