Tuesday, January 31, 2012

ME and CFS - is one more real than the other?

Part 2 of Trusadh, the Gaelic programme about ME/CFS was on BBC Alba last night, and can be watched on BBC iPlayer here - http://www.bbc.co.uk/programmes/b01b1z0l - for the next week or so, maybe longer. If I find a YouTube upload for it, I'll leave a link in the comments for those outwith the UK.

Sometime soon I'll write more about how Mickel Therapy has managed to improve the quality of my life where other things have failed.

However, during the past week or so, following the first programme, I've become more aware of the debates within the ME/CFS communities, and some of the hostile attitudes towards Mickel Therapy. What I wasn't quite prepared for was the strongly held opinion by some that ME is a real illness but CFS somehow is not.

When I was approached to be in the programme - Trusadh, on BBC Alba - about ME/CFS (see ME, me and Gaelic TV), I was told Mickel Therapy is controversial – that it is not accepted as a valid treatment by either the NHS or the ME Association, but there is a lot of anecdotal evidence with plenty of people claiming significant levels of improvement or even complete cure.

When I looked up Mickel Therapy online, there were many prepared to say Dr Mickel was just a money-making charlatan and that at best, those who recovered were probably responding to some kind of placebo effect.

And I have to say, when I read Dr Mickel’s book, I wasn’t overly reassured – some of the concepts are poorly explained and it can sound at times like it’s bordering on some kind of mystical practice.

Having been through the therapy sessions, I can happily say there is nothing mystical about it. It doesn’t require leaps of faith, dodgy beliefs, pills, potions, magical symbols or crystals being placed under the pillow.

What it does require is a shift in your narrative – your understanding of how you interact with your thoughts and emotions, and changing how you respond to life’s little (and not so little) irritations and upsets.

It comes under the category of “talking therapy”, which distinguishes it from physical or drug-based therapies. For many, however, the idea a set of words could possibly have an impact on a physical ailment sounds like something out of Harry Potter, not the medical world. It seems nonsensical.

But then in our culture, we are often given to believe there is a huge separation between body and mind. One is physical, the other mental and each has its own set of illnesses, which have to be treated physically or psychologically according to which they are.

And yet, how separate are they? Can one not affect the other? Supposing you suffer from shingles, which is made worse when you get stressed – is that a physical or a mental condition? If you can learn techniques to calm your mind so the shingles attacks lessen or disappear, does that mean it wasn’t real, or that it was all in the mind?

The boundaries between body and mind are far less distinct than we generally believe.

But this idea of separation is unquestioned by many, and I think this is what leads to the belief that Mickel Therapy and others like it either it can’t be a “real” treatment, or it can’t possibly work on “real” illnesses – leading to what I have read many people say - if it works, you couldn’t have been properly ill in the first place.

The ignorance, and arrogance, of that position is to my mind the most controversial aspect of it all. It seems there are plenty of people around who wish to place their life-debilitating illness in a hierarchical superior position to other life-debilitating illnesses (my illness is more “real” than yours – or mine is physical, whereas yours is “just” mental).

Within the ME/CFS world, there are many who get upset that ME (Myalgic Encephalomyelitis ) appears to have been “downgraded” to be encompassed under the CFS (Chronic Fatigue Syndrome) banner. This or that study is quoted to show that ME is a separate condition.

Maybe it is, maybe it isn’t. I’m not a doctor or researcher. I use the label CFS or ME (or whatever combination) because that’s the label the doctor gave me. All it ever meant to me was, “We accept you suffer debilitating tiredness, but we don’t know why, or what can be done about it. CBT (Cognitive Behavioural Therapy), GET (Graded Exercise Therapy) and even anti-depressants help some people to varying degrees. We can arrange them for you, but if they don’t work then we don’t have any other answers, so you’ll just have to go away and live with it.

Maybe I have ME; maybe I have CFS; maybe I have something entirely different. All I do know is the symptoms have been horrible to live with and the idea that they might never ever go away has felt appalling. To have lived nearly 6 years with depleted energy levels, brain fog and virtually no emotional reserves, and with the prospect of no end, has not been fun to say the least.

Now the Mickel Therapy has had a significant effect on me. I might not be 100%, but I am much improved and I now have a system, a path, which is highly likely to improve me further in time and stop me relapsing.

This means, instead of having to write off the rest of my life, I now have hope again.

But I find it astounding, irritating and not a little sad, that there are people who want to say that if Mickel Therapy has worked on me, then somehow I wasn’t really ill, or my illness was “less-than” theirs.

I can fully understand anyone not wanting to be misdiagnosed (I have this condition and you are saying I have that condition and are treating me for that, but it won’t work on this), but doesn’t mean their illness is more “real” than the one they think theirs is being mistaken for, and it is incredibly insulting to say that it is. Yet I frequently seem to come up against this attitude.

I can understand it comes out of frustration, but do they not see the irony in the fact they have fought so hard to say their condition should not be treated as less-than, when they are prepared to dismiss someone else’s condition as such?

It matters not if you have ME, CFS, Depression, OCD, MS, or any other illness – if it is debilitating and impacting on your life, then you deserve help and support. If an illness is devastating your life, then hierarchies about what counts as more important, or more “real” are a nonsense.


20 comments:

angryparsnip said...

I have been reading your posts on this with much interest.
I am glad that you seem to be doing better and have found some relief.

I have one of "those" pretend illnesses that stay at home moms get for attention.
I was diagnosed over thirty years ago and only now because of TV dramas do people sorta of think maybe you are ill. My x was one who never believed me and of course male doctors of a certain age thirty years ago all think women are crazy anyways.

Good luck with continued health.

cheers, parsnip
the verification word was demen pretty close don't you think ?

Carole said...

Interesting. I am surely surprised that people who have ME would ever argue about CFS being real. I think they must be concerned that their illness won't be taken seriously if too many people have the same symptoms. Odd.

Mickel Therapy sound interesting and will be looking forward to your posts on it. I am glad that you were willing to try it. Nothing ventured, nothing gained.

Cusp said...

Well as soon as anyone says CFS in a scenario where M.E. is also mentioned all the hornets spew from the nest. As Nasimn and others have said: it can get very vicious.

I can understand your concerns about a hierarchy and I think that some pwme do see a hierarchy. Some do not. The worry is that in accepting the term 'chronic FATIGUE syndrome' there is also the association that this condition is more about fatigue than about other stuff whereas most people with M.E. (like me ...and my GP insists I have CFS too !) will tell you that fatigue is only a tiny part of the misery. Indeed some pwme will tell you that fatigue is the least of their worries. People with M.E. often do have fatigue but also have IBS, terrible headches/migraines, cognitive issues, nausea, muscle and joint pain, visual disturbance, balance probs, POTS, breathing difficulties, Chemical sensitivities.....the list goes on. People are bed bound, unable to feed themselves. I suppose to the people who are that poorly the notion of calling their complaint 'fatigue' is an insult.

There is also the political angle and the reasons why certain doctors (of the mind mainly) prefer to use the term CFS and why certain governments and insurance conglomerates want to use the term CFS. Thats why people get so hot under the collar.

For myself, I agree that misery is misery and if there is something which allevaites that, then jolly good. I have an acquaintance who suffered from classic M.E. from age 14 to 37. She was properly diagnosed. She did Lightning Therapy and has now gone to work, runs marathons. I know more people with M.E. who have done Lightning and become worse or it has made no difference.

The reason why I appreciated the prog. was because all this was spoken about and the point was made that the terms CFS *and* M.E. encompass a multitude of 'sins'...including those people who really are tired a lot and just adopt the term M.E. or CFS with no formal diagnosis at all. The whole thing is a mess and thats why there is such a need for clarification and calling things by their proper name.

As it is I have no proper idea what I have either (though all my symptomes and slight improvements and relapses of the past 40 years fit a perfect M.E picture) because there's no definitive test...and that's why you dont know what you have either. We're all wandering around in the dark with Scientists, Doctors, Charlatans, well meaning people, politcians and big business taking advantage of a very vulenrable group of people.

Really good to know Mickel has helped you. As you said or implied in the prog., it's lovely to be able to live with hope again :)...and btw, none of the above is in any way trying to diminish whatever you have also been through

debra said...

Just because something isn't understood doesn't mean it isn't real.
And that is what I have to say. (o)

Theanne said...

Your last paragraph says it all and quite well too I will add!

I first ran up against this attitude when I started going to specialists years ago. In my case a gynecologist and a urologist, who did not seem to accept that I was me, a whole complete person not just different organs for them to practice their specialty on! At no time was there any discussion that what was happening in one organ could be causing what was happening in another organ! I ceased to exist and the pill brigade began and the tests and the cystoscopic exams and dilations and on and on! Until finally I had a female family practitioner, who discussed my whole body...discussed with me, how novel! I ceased to be an organ or a condition or a symptom...I was me with a crappy urinary tract infection...for the millionth time. She suggested things for me to try, I tried them, they worked and I haven't had a UTI for about 30 years.

If it works and you feel better than the therapy was/is a good thing for you! And fighting over whether ME is more of a real medical condition than CFS is asinine...likened to the police department fighting with the FBI over who has jurisdiction in a case...for heaven sake get the job done.

I couldn't get the link to open so haven't been able to see/hear the program!

Pat said...

People can be incredibly stupid sometimes - such a waste!
I look forward to hearing more about Mickel therapy and rejoice you have found it helpful.

Sayre said...

I'm so glad you've found something that has made an improvement in your life and symptoms. Especially when all the doctors have to offer are a couple of therapies and maybe some antidepressants - all of which may or may not help.

I do believe in a mind-body connection. Your mind is an amazing instrument. It is what allows women to have babies without going crazy from pain.

In my own case, I live with pain daily, but my mind deals with it quite well. When I'm over-tired or my brain isn't engaged, I'm amazed at how many things hurt and how badly - and what a good job my mind does of supressing all that most of the time!

Digitalesse said...

I think you raise a very real concern about whether a condition is ME or CFS or depression or something else, and for drawing attention to a kind of 'hierarchy' that plays down the reality of other fatigue-causing illnesses.

Depression is also a very misunderstood condition, often trivialised and seen as some kind of consequence of the feeble-minded, or whatever. Although I have the straight-ahead classic, neurological version of ME, I hope that I would never play down the reality of an illness like depression which I know can also be a life-threatening illness for some people.

I've seen various hierarchy scenarios being played out in ME circles—"Oh, there's nothing wrong with that one, s/he's a nutter" and people with severe ME being described as "very good at faking an illness" by people within an ME support group. It is quite shocking that people living with an illness and who seek support from people who you'd think would be ME-aware face the same prejudice as they'd find from people who don't believe in ME in the first place!

Some people can and do make progress and regain their health to some degree, and it isn't surprising that those people encounter negative attitudes. Fortunately I've not suffered from depression as part of my symptom pattern but I've also been on the receiving end of barbed comments along the lines that I'm not unhappy enough to have genuine ME (yes, really!).

I am interested in your comments about how MT had provided you with strategies, and if you are benefiting from the therapy, then surely that's a good thing.

Kim Ayres said...

Parsnip - 30 years ago my mother was shoved on Valium because she was basically restless with her life, which lead to a series of stronger and stronger drugs and destroyed several years of her life. So yes, I recognise that attitude towards women from doctors of a certain age...

Carole - there's always an underlying suspicion that if there isn't apparently anything wrong with a person from the tests, then they might just be making it up. While I can understand that, even if I disagree, what I find appalling is how some in the ME community can accuse others suffering from Fatigue of exactly the same thing

Cusp - as I said in the post, I can fully appreciate people not wanting to be misdiagnosed. If defintive tests for MS had not been discovered, you can be sure people suffering that would be thrown into the same CFS category too. The point I was making was when ME sufferers have had to fight so long to be believed that anything was wrong with them, it seems bizarre that some will dismiss others who have unexplained illnesses.

Debra - and very true words they are too :)

Theanne - sorry to hear of your trials. That lack of joined up thinking is something, I think, endemic and even built into the medical world. While specialisation has allowed tremendous advances in many ways, it has also often created dangerously exclusionary outlooks, leading to "if it's a problem in this area, then we only look at this area" and failing to see how many different areas can be interacting with each other.

Try these links - Part 1, Part 2

Pat - thank you :)

Sayre - it's quite astounding really that most people believe there is such a strong separation between mind and body - 2 separate entities. Yet even a cursory glance at experience shows how much the state of mind can effect the body, and the state of the body can effect the mind. The 2 cannot really be separated at all.

Digitalesse - welcome to my ramblings :)

Having had a relationship with Depression on and off through much of my adult life, I'm very aware of how misunderstood it is. The lack of understanding and predjudice, and fear for that matter, of mental health issues is huge in the population at large. And it seems the same predjudices also exist within a sector of the ME community.

Cusp said...

Well I think I can only agree with your response to my comment. Having spent 30 years being misunderstood and misdiagnosed by doctors I really do take your point. Just after diagnosis I started to explore/research the 'M.E./CFS community' and was shocked by the vitriol and backstabbing within some groups. Thankfully I've since found some really lovely people through blogs and FB

Kim Ayres said...

Perhaps what it partly comes down to is I've never taken ownership of the label ME.

All I know is I've had an unexplained Fatigue that drastically impacted on my life.

Doctors gave me a label to describe my condition, but that label never in itself meant anything other than "no idea what's wrong, pal"

So the idea that some people want to claim superiority of their mystery illness over my mystery illness - or more precisely that their mystery illness label is more valid than my mystery illness label - just seems like a nonsense to me.

nmj said...

Hey Kim, This is a fiendishly long comment, forgive me in advance, but having had a break, I just want to get this down before too much time has passed since Alba. Personally, I think it’s a red herring to compare one illness to another, or one form of suffering to another, and I’m sorry that you have felt that your illness/experience is being 'trivialised' by some PWME. I hope I always acknowledge that people with ‘fatigue disorders’ such as CFS and idiopathic fatigue go through their own hell, their lives are disrupted/on hold, they are having a crappy time too. If I have ever been detrimental about CFS it is not at all towards sufferers but to the medics who have conflated our illnesses.

Still, I think it is *so* important for you and your blog readers to know the context of the anger of PWME, the anger is not - and should not be! – towards those with a diagnosis of 'CFS/ME', but *at* those responsible (the psychiatric lobby) for conflating neuroimmune illness with biopsychosocial illness. They are *not* the same and it is simply harmful, and divisive, to put them under the same umbrella.

My belief (and experience) is that ME is a neuroimmune illness, simply catastrophic for most of us who get it (usually triggered by a virus), taking away years/decades of our lives, and most of us never get back to anything like our former healthy selves. The core/defining symptom is post-neuro-immune exhaustion (PENE), which has very little to do with fatigue, as I tried to describe in Alba Part One. I would *never* refer to this symptom as fatigue. There are also many other symptoms as Cusp has said, not being able to stand for long (orthostatic intolerance) is a major one for me, another key ME experience.

Yet, astoundingly, since early 90s, this neuroimmune illness ME has been hijacked by psychiatrists, and conflated with biospychosocial illnesses like (CFS) and idiopathic fatigue – the neurological status has been ignored, biomedical research has been denied, health editors have been lapdogs to certain psychiatrists - it is almost impossible to understand the misrepresentation/bizarre attempt at redefining of my illness that has gone on. As longterm and/or severe ME sufferers, we have been told we have false illness beliefs that perpetuate our illness – and that is why we get so angry. But I *reiterate*, the anger is not at those diagnosed with CFS! (NB. The label CFS did not exist when I was diagnosed by Prof Behan in early 1984.)

In Scotland, the Scottish Public Health Network recently recognised the need to distinguish between ME and CFS:

http://www.scotphn.net/pdf/ME-CFS_short_report_-_2011_09_09_Final.pdf

The conflation means that a GP will tell you that you have ‘CFS/ME’ when you may not have ME, but instead, CFS, the kind of syndrome that *may* well respond to talking therapies and graded exercise, and will not be made worse by. (ME, crucially, is usually made worse by graded exercise).

You say at the end of your post that you may not have ME or CFS - it may be entirely something else. People with ME (the illness I know as ME) tend to be fairly sure they have it, it is clear to them, they would not question it, the sheer ‘physicalness’ of the symptoms is so overwhelming, if that makes sense. Psychological/emotional symptoms are secondary. The current criteria that those of us with ME want to be adopted are these:

http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/abstract

I’m including these links more for your blog readers than for you, to give them a taste of the criteria issues, I’m sure you are already aware or have had enough of such links ;)

I’d also like to say I am truly glad you are feeling better, Kim. But it’s just not as black and white as PWME being snippy, saying CFS is a ‘downgraded’ version - that is what I am trying to say. I’d be more than happy to send you a signed copy of my book as a gesture of warmth, you can email me through my blog if you wish.

All good things to you

NASIM

Kim Ayres said...

Hi Nasim,

I hope you realise the blog post was never aimed at you - I fully understand your position, and know that your gripe is at the idea of 2 (at least) different conditions being forced under the same label, to detrimental effect.

I'm fully open to the idea that ME is different to CFS. I know you will not have the energy to trawl back through my blog posts, but if you follow this link, it takes you to a post about my description of CFS - What is Chronic Fatigue Syndrome?.

Whatever other might be said about it, it is a debilitating condition that has a huge impact on the lives of sufferers (and I'll add that CBT and GET didn't help me either).

My gripe was against those who were saying that ME was a real illness, but CFS was not. I know this is not what you were saying :)

I have no idea whether MT would work for you or not. I do suspect that at the very least, it would give you some coping strategies that over time would lessen the impact of your condition. However, as it's not free and available on the NHS, that's the kind of decision only you can make with the best understanding that you have, and it's certainly not my place to tell you you should.

A copy of your book would be lovely. It might take me a while to read it - one of the symptoms of whatever my condition is, is the inability to read more than about 2 pages of anything I find interesting, in one sitting. My brain starts fogging and my eyes start blurring. But it would be good to have on my reading list. And in return, when I'm in Edinburgh at some point, I'll take your portrait :)

Wishing you the very best,

Kim :)

nmj said...

Hey Kim, Got your email, will get a copy of TSoM off to you as soon as poss! Delighted you will take a photo, the one on my blog is 4 years old, and the Harper C one is too, maybe time for an update.

To be honest, I don't feel the need for coping strategies, I cope well with my illness, it is the physical symptoms that floor me (the brain fog comes as a result of physical exertion, my whole body and head shut down). The more physically ill I am the less I am able to do, but after 29 years, annd learning the hard way, relapsing catastrophically when pushing myself to 'recovery', I now pace and rest and that's really it.

Agree, again that *all* illnesses should be respected and people supported, but PWME have not been, the opposite, in fact, and that is where all the 'fechtin' starts.

Okay, enough of this, have a lovely weekend! I am dreading the snow, I hate the stuff! I hope it misses Edin out. NASIM

Kim Ayres said...

If it snows this weekend, open your window and build a wee snowman on the ledge :)

Have a good one Nasim!

Richard said...

I'm happy that MT has given hope for the future and improved life in the present. I've read lots of stories of it helping people to a full recovery over time. I've been tempted to try it but at the same time slightly worried about the sort of changes that might be deemed necessary to try to improve. Sure, one has lost a very fulfilling lifestyle when this illness comes along, but in order to improve does MT recommend changes and where do you draw the line ? You don't need to answer that Kim. I just wanted to say well done for doing the Alba show and best wishes for further recovery steps. Richard

Kim Ayres said...

Hi Richard

Well yes, changes are recommended. Have you heard the saying which goes something like, "If you keep doing what you're doing, you'll keep getting what you're getting"?

Another version is "The definition of madness is continually doing the same thing, yet somehow expecting different results"

MT is about changing the relationship between your conscious thoughts, your emotions and your body. Instead of instructing your body & emotions on how they should react, you learn to listen to what they are telling you and adjust your actions to work with them.

You could say that instead of trying to change the direction of a wave, you learn to surf.

But MT doesn't tell you what the details of your life should be, only how to listen to your body and emotions and change your actions accordingly. You might end up deciding this requires a major life upheaval, or it might just require subtle, but profound shifts in your daily interactions.

I don't know whether that helps or not.

Thank you for your well wishes :)

nmj said...

Hey Kim

I've just got round to reading your post on 'What is Chronic Fatigue Syndrome'. I did not understand what it felt like, I just knew it was not the same as ME, and having read your post I'm even more perplexed as to why some in the medical profession have lumped our illnesses together. When you made the paper cut analogy on Alba, I remember thinking, this does not describe the neurological ME I experience, but having read your post, I think it is a good way to describe chronic fatigue. I hope to have the novel sent out to you tomorrow or Friday! Hope you are having a good week. N

Chris Hayes said...

Hi. I was diagnosed two years ago with "mild post-viral chronic fatigue syndrome" following two severe viral illnesses in 2006, shingles and viral pneumonia. I was also left with heart rhythm problems, which were later corrected by surgery. The medics all blamed how I was feeling at the time on the heart condition and the drugs I was taking for it, and had great difficulty dealing with the fact that it did not improve once the heart problem was solved and I was of the drugs. My GP was sympathetic, and performed a wide range of tests to rule out anything else, arriving at the diagnosis above by a process of elimination. This was later confirmed as "textbook" by a specialist. I love your description of the attitude of the medical profession, and also that of how it feels to live with these symptoms. I have encountered a considerable amount of prejudice and sheer disbelief about the reality of my condition, especially as in my case it is mild and even though it has a major effect on my life, I am still able, by pacing myself and mixing my activities, to achieve quite a lot. I do wish the medical profession could sort out the confusion created by the use of a few labels almost interchangeably for a spectrum of vaguely similar symptoms which are the result of who knows how many specific underlying conditions. I wonder whether this "in-fighting" between sufferers labelled as having ME or CFS is only lending weight to those who argue these conditions are other than genuine? I feel that, whatever the specific cause, our lives are affected in similar ways even if to diferent extents, and that we should work together to achieve greater understanding of and sympathy for sufferers.
All the very best from a fellow photographer,
Chris Hayes.

Kim Ayres said...

Nasim - glad you got a chance to read it. Looking forward to receiving your book - many thanks :)

Chrys - Sorry to hear of your trials. And I know what you mean about the in-fighting. Sometimes it feels like The People's Front of Judea from Monty Python's Life of Brian :)