a Guardian item about ME and CFS

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Offworld

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a Guardian item about ME and CFS

  • on: 15 Feb 2016 04:04PM
Yet another article in a UK newspaper promoting -- albeit more subtly this time -- "Unum" type lies about ME and CFS.

http://www.theguardian.com/society/2016/feb/15/it-was-like-being-buried-alive-victim-of-chronic-fatigue-syndrome

But in the reader comments after it there is interesting information ... which UK journalists ought to be citing, but seldom do.

Sunny Clouds

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Re: a Guardian item about ME and CFS

  • on: 15 Feb 2016 10:16PM
Promoting what lies?

It makes it clear that the diagnoses are controversial, that people aren't even agreed as to whether they're the same diagnosis.  It makes it clear that there's no definitive test and that this affects the reliability of research.

It summarises different theories and approaches and explains how controversial some of them are.  It compares the success rates of some treatments and shows that the success rates in relation to conditions that haven't been shown to be a single/dual condition are far from 100%.  It draws analogies with other conditions that have both physical and mental components.

What I feel very uncomfortable about here in relation to the OP is what I perceive as a big problem in the UK in relation to ME/CFS, and that is that when people put forward different hypotheses that can be tested, if they're not popular with some people with the condition, they're jumped all over.

Several members of my family had dementia.  It causes both mental and physical symptoms.  It is not the only condition that does.  The notion that a condition can affect both mind and body is not a new one and relates to many conditions.  Think of people with retarded depression - the fatigue and slowness are as physically real as those of people slowed down for other reasons.  If the condition had initially been seen just in physical terms, would people have been up in arms had a mental element been discussed?  And I don't see people with conditions like that up in arms if a physical element to a mental condition is discussed.

So I am hacked off with what appears to me to be hostility towards any article that even begins to discuss different areas of research and different theories in relation to ME/CFS, because I have read too many accounts by researchers who say either that they started researching it and stopped because of all the hassle, or that they would like to research it but are put off by all the hassle, which I believe will set back any sort of explanation, diagnostic tools or treatment for years.

I am also hacked off every time there's some sort of implication that saying that there's a mental component to something means that it's not real.  I find it grossly offensive.  I interpret the OP as referring to the theories relating to that aspect of ME/CFS.

Finally, the notion that one might tackle the mental aspect of something physical from a treatment perspective is again not something people get hung up about in relation to, say, arthritis.  I am sensitised to this issue by a close relative who is in terrible, chronic pain but who is still ranting years after a pain clinic offered CBT about that meaning they thought it wasn't real, it was 'all in the mind'.  In vain do I try to explain to him that they use CBT to help people cope with conditions such as rheumatoid arthritis where extremely distorted fingers make it abundantly clear that there is a genuine physical cause for the pain.

Finally, may I point out that in the past, 4 doctors in totally different contexts (i.e. not more than one in any one clinic/practice and none referring me one to another) diagnosed me with what they used to call Royal Free, and later Yuppie Flu, so I speak from the perspective of someone who has experienced this condition.

If that had happened with patients being that angry with people exploring different explanations of conditions, many of the treatments we now have for many conditions wouldn't exist.
(I'm an obsessive problem-solver, so feel free to ignore any suggestions or solutions I offer, even if they sound terribly insistent.)

Mabelcat

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Re: a Guardian item about ME and CFS

  • on: 15 Feb 2016 11:13PM
I thought the article was interesting and on the whole agreed with what was written.  There is a huge problem with the separation of mental and physical disorders into two distinct camps.  To me it seems obvious that mind and body are inextricably linked and that psychological factors affect physical health and vice versa and mental and physical disorders are equally real.

I don't entirely understand the science but stress and trauma both impact on the immune system and produce changes in the brain which can be seen at MRI scans.

I have a long history of anxiety and depression and was diagnosed with ME/CFS around ten years ago and I'm sure the conditions are linked.  Equally, I am sure the ME is a physical condition as well.  I left the last support group I went to because when I tried to explain how I felt about my ME, not anyone else's, I was told very firmly that it's been proven to be a physical condition, that it's real and we aren't 'nutters'.  I was really upset about this.

I suspect another issue is that ME/CFS is a name for a syndrome or cluster of symptoms and not every one with the diagnosis has the same condition which further muddies the waters.  I have had CBT and it hasn't improved my symptoms but it does help me to interpret what's going on when I'm struggling. 

It's a horrible condition to deal with and I hate it even though I am relatively lucky in that I can just about manage to work and look after myself.  I just hate what I have to call the hostility towards psychological explanations and feel it stifles progress in the development of effective treatments and management strategies.  I suspect the purely psychological explanations are mistaken but so are the purely physical.  It's a multi faceted condition or group of conditions with multiple causes.

Mabelcat

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Re: a Guardian item about ME and CFS

  • on: 15 Feb 2016 11:16PM
PS I do understand the frustration of the misinterpretation of symptoms.  I was treated for anxiety when I had an overactive thyroid and again when I actually had appendicitis.  I could have died.

RoseRodent

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Re: a Guardian item about ME and CFS

  • on: 16 Feb 2016 05:17PM
It's interesting that the test case in the article who describes herself as "recovered" works only part time and "has to be careful" about what she does. So she's found a baseline and is practising pacing by any other name, but is describing this as having "recovered" so it very much distorts any stats on what represents a recovery.

For me I think the issue is that 99% of GET programmes don't go slowly enough. GET which asks that you wiggle one finger a little for 2 minutes a day is very studdifferent from the ones which approach a very ill patient and tell them to go for a brisk walk. And yes, this totally happens.

And while it may be that 22% success is "the best currently on offer", it also means that it will NOT work for 4 of every 5 - are those odds which encourage people to want to engage?

Sunny Clouds

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Re: a Guardian item about ME and CFS

  • on: 16 Feb 2016 10:14PM
Why would recovery necessarily mean getting back to where you were?  If you've recovered from having a leg amputated, you still have fewer legs than before, you still can't walk like before, you need to accommodate the reduced capacity.  Recovery is used in relation to a wide range of physical and mental conditions to mean not to be as you were beforehand, but to be back on your feet again, metaphorically.

Having said that, maybe it could have been made clearer that recovery was in that context, used as it is in relation to so many conditions.
(I'm an obsessive problem-solver, so feel free to ignore any suggestions or solutions I offer, even if they sound terribly insistent.)

Mabelcat

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Re: a Guardian item about ME and CFS

  • on: 17 Feb 2016 10:28AM
Recovery has become a very misleading term these days.

Dic Penderyn

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Re: a Guardian item about ME and CFS

  • on: 17 Feb 2016 01:21PM
Remission is not recovery or cure.
Be careful in what you wish for, God has a sense of humour

Sunny Clouds

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Re: a Guardian item about ME and CFS

  • on: 17 Feb 2016 03:43PM
But recovery and cure aren't the same thing.

Recovery is used in more than way.

Think about when someone has a stroke or gets run over and has their leg amputated or has bipolar disorder and is hospitalised... and then think of what's said when they're discharged from hospital, having 'recovered'.

Recover-ed/-y are used differently in relation to different conditions, but recovery is widely used to mean something other than cure, especially in relation to relapsing remitting conditions or in relation to conditions that may not go away but where you can either resume the life you had before or make a new one.

If you have a psychotic breakdown and recover, that doesn't of itself mean that you will not have further breakdowns or that you will ever function at the level at which you functioned before having that breakdown.

When you look at the range of terms we're using on here, I think Rose has an important point about terminology used distorting stats, although I'm not sure how far it actually distorts them as opposed to people's references to them (I'm open to argument on it), and I do, as I said, think it could have been made clearer that recovery in this context is used as in so many conditions, which I think Mabelcat's comment about recovery having become a misleading term fills in the gap on. 

However, whilst you pick up on important points by introducing more terms, the implication I read when you say remission is not recovery or cure, is that you equate recovery and cure.  But in relation to some conditions, finding a way of living with your condition and not currently being in crisis is seen as recovery.  The Recovery Model is very important in terms of some forms of treatment and in practical terms in causing quite a few people with incurable conditions not to give up.

So whilst I agree with the proposition that the terminology used wasn't helpful, and whilst I think that it would have been best to make it clear, I do think that recovery and remission are used synonymously in some areas of medical care.

Think of it as where one person uses the Social Model of disability and another uses the Medical Model.  You may disagree in principle with the model you don't subscribe to, but that doesn't mean that the person using a term like disability in the way it's used in one model but not the other is using it incorrectly.
(I'm an obsessive problem-solver, so feel free to ignore any suggestions or solutions I offer, even if they sound terribly insistent.)

Dic Penderyn

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Re: a Guardian item about ME and CFS

  • on: 17 Feb 2016 07:31PM
Thank you for the information but I do have an honours degree in podiatric medicine so do know the difference.
Be careful in what you wish for, God has a sense of humour

Sunny Clouds

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Re: a Guardian item about ME and CFS

  • on: 17 Feb 2016 09:14PM
Well, I'm sure your degree in podiatric medicine is very relevant to your experiences of ME/CFS.  Doubtless it was helpful to you in your recovery or non-recovery from it, depending on what your experience was (which I don't know) and how you prefer to define that experience and describe it to others.

Personally, I feel that my own experiences of recovery from ME/CFS have been of more use to me than  my postgraduate qualification in a health field.

However, when it comes to the comparative use of language, it would be nice if we didn't have to play 'my qualification is more important than yours and/or was in a more relevant field than yours'.  After all, someone with no qualifications at all might have equally valid points to make and be able to make helpful contributions as to how the article and the language used came across to them.




(I'm an obsessive problem-solver, so feel free to ignore any suggestions or solutions I offer, even if they sound terribly insistent.)

Mabelcat

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Re: a Guardian item about ME and CFS

  • on: 17 Feb 2016 10:56PM
The way I feel at the minute is stuff recovery or remission, I'd like a cure.  Now.

Sunny Clouds

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Re: a Guardian item about ME and CFS

  • on: 17 Feb 2016 11:02PM
 >thumbsup<
(I'm an obsessive problem-solver, so feel free to ignore any suggestions or solutions I offer, even if they sound terribly insistent.)

Defying Gravity

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Re: a Guardian item about ME and CFS

  • on: 19 Feb 2016 11:41AM
I'm doing a PhD in mental health recovery.... This is very interesting!

Sunny Clouds

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Re: a Guardian item about ME and CFS

  • on: 19 Feb 2016 12:12PM
If I may digress into mental health recovery, with an observation on my local situation, there's something I find funny.

When I got embroiled in local mental health services, expecting an approach along the lines of 'you've been through some awful experiences recently and some of it has also dredged up bad experiences from the past, let's build on your strengths to help you get back on your feet', what I got was 'you've got bipolar disorder, which means there's something fundamentally and permanently wrong with you, and we'll give you loads of drugs but you'll still be ill, and by the way, your thinking's all wrong, and we'll keep telling you that and banging on about positive thinking'.

But it was that set-up that also kept chucking around the word 'recovery'.

So I went in thinking in terms of breakdown, pick myself up, get on with life and what I got was something wrong with you, we can't fix you, we'll keep telling you you're defective and zombying you with pills then we'll call it recovery'.

 >steam<

BTW - I had a manic depressive diagnosis 25 years or so before this wsa all flung at me.  For decades, people didn't speak of 'recovery', but neither did they keep emphasising how defective I was.

Thank heavens for BBC Ouch and Ouchtoo and the social model of disability.  I'm more mixed model than social model, but that's rather more empowering than a pure medical model, especially when the medical model is focussed around negatives.

Here endeth this lunchtime's rant.
(I'm an obsessive problem-solver, so feel free to ignore any suggestions or solutions I offer, even if they sound terribly insistent.)