Tuesday, 31 January 2012

Post-Alba: 'Toxic Tiredness' (Part Two) - updated

(*Having re-watched Part Two, I've now added to this post in bold at the end.  And Part One is blogged here. **Also, both parts are available on you tube  now. One here and Two here.)

I'm not blogging about ME in February, or perhaps ever again(!), I badly need a break, so this is a quick response to Part Two, I need to watch again, my thoughts now, honestly disappointed - there was a real lack of balance this week, too much focus on emotions and depression and 'being kind to yourself', which have absolutely NOTHING to do with neuroimmune illness; also, too much pro-Mickel, there should  have been someone who did NOT recover with MT. It all just seemed a bit pat, and I still don't understand what MT is! I couldn't follow the steps. And I certainly don't agree with David Mickel that ME belongs to a group of 'fatigue disorders'. No siree.

It just seemed a bit cobbled together this week, there was no sense of narrative, last week's felt sharper.

Delighted for Holly, though, who had clearly been severely ill (she made me think of my friend described in below's post), and I felt she was describing the ME I once knew, sitting on the stairs to get down one at a time, cos I could not walk, but also - what role does pregnancy play in improving ME, how does she know that wasn't/isn't a sustaining factor? And how did she get to the stage from being so ill to being able to consider pregnancy? That seemed to be pre-Mickel, but was just skipped over completely. But hers was the narrative I wanted more of. Her experience of MT would have been more meaningful to me.

Also, if you are treating someone who also has had depression - Kim the photographer - that muddies the waters. I think from a pure ME p.o.v, we need to see MT demonstrated to work on patients who are not at the same time depressed (or afraid of becoming depressed), or pregnant (absolutely no disrespect to Kim or Allison).

We also needed more Prof Behan - we had to wait 35 mins! (and I was secretly wishing  my book would have been on his shelves). Quite emotional seeing him, took me back to the days of hell, when I attended Southern General. 

Interesting - he now says that stressors like strokes and some post-surgery states can also trigger ME?

Loved his chat about enteroviruses and mitochondrial damage. He is the man.  

Was also a bit peeved - they said -  I regularly take part in online debates, I stay away from forums as much as poss!  I go to MEA FB - mainly for info - and occasionally Invest in ME, that's  pretty much it. (And I comment on BMJ when necessary.) I neither have inclination nor energy to argue in circles with people you are on the same side as. It sucks the very life out of you.

So, yes, I hate to say it but I feel a wee bit disappointed, but I will need to rewatch, absorb it properly. I think I said 'take psychiatrists away from the research', and I stand by that... 

Still, the role of low cortisol/hypothalamic dysfunction - is that the right term? - is interesting in ME - I improved for a *very* short time with ACTH injections - and £5 million would perhaps have been better spent on Mickel than PACE. There's a thought.

On the plus side, no shots of me looking like a bag lady who found her sunglasses in a skip - (my gorgeous precription sun specs just don't look so glam on film) ...

To clarify: approx 47 mins in, the voice-over/ subtitles say that I've 'encountered threatening behaviour' online, which is misleading, I've personally never encountered 'threatening behaviour'. Yes, I've been upset -  there is often heated debate between PWME - attributable in large part to the lack of belief and confusion of criteria - and I've been demoralised/dismayed at how disrespectfully people can speak to one and other (especially those who comment anonymously or under pseudonyms), and I - for the most part - have learned to avoid those situations, where whatever you say will be skewed. However, there is also a great deal of support and warmth online, a generosity of spirit. Undoubtedly, the *ugliest*  comments I've seen are from members of the public - including  doctors - towards people with ME - I've been horrified at times by the prejudice and cruelty. The most upset I've personally been was after going on the Bad Science (Ben Goldacre) forum last year,  only because  a comment of mine from CIF had been cut and pasted there - needless to say I never went back.  As someone said, that is a lion's den - and those people are - I understand - supposed to be scientists. But there is just so much at stake here, after all the heated/recursive/looping threads, after all the laptops and iPhones are switched off, we remain ill, we still have ME.

Pleased with my comments on biomedical research,  48.30 mins in: 'Take psychiatrists out of the equation. Let psychiatrists study psychiatry, let neurologists,  immunologists, virologists, let all those good people study ME.'

Update: I'm less disappointed in Part Two on a second viewing. I think the story of ME  has been represented in as 'simple' a way as possible (and I mean that in a positive way). 'Trusadh' is a human interest/documentary format, it is not investigative journalism. As I've said before, it would take a six-hour Panorama special to portray what has gone on in the world of ME since my diagnosis. Kim (the photographer) has discussed in a new blog post his experience of being dissed ('CFS is not as real as ME'). I commented on his blog, in a respectful way, to highlight why this may have happened (not that anyone should diss anyone else, it is the medics who need dissed.) And I'm truly happy for everyone featured on Alba who has experienced an improvement in health. I did wonder if the young student featured in Part One had had a self-limiting post-viral state, or maybe he had a milder ME and recovered fully because he had rested sufficiently?

To have Prof Behan saying on television that there is an 'essential biochemical component to the illness which needs to be elucidated, and research should be along the grounds into these illnesses rather than dealing with psychological talk the talk nonsense' is just priceless. Also, I didn't realise he had examined some of the original Royal Free patients thirty years later, and that his late wife, Professor of Pathology Dr Mina Behan, had identified abnormal mitochondria in *those* patients.

Psychologist Professor Roddy Cowie rightly points out that scientific debate is often heated, not just ME. However, the history of prejudice against people with ME and the re-defining (hijacking) of criteria is what marks it out. After  almost 29 years of illness, I passionately adhere to the theory that ME is neuroimmune and CFS is biopsychosocial, and that it has been hugely harmful, misleading - and divisive - to conflate them. Still, the conflation is part of the narrative, and 'Toxic Tiredness' has shown this. But when anyone starts talking about changing lifestyle, and acceptance and banishing fear, I am pretty sure they don't  experience the same illness I experience.

The last word goes to Prof Behan: 'I have not seen any form of cognitive therapy or talking therapy to be of any value. I'm not saying that if someone who is in authority and who offers you warmth and kindness . . . won't have an effect for the benefit, it will, but the answer that it's the cure, I'm afraid, is wishful thinking.'


Kim Ayres said...

Disappointing from my point of view too.

While I have never hidden the fact I've had an on-off relationship with Depression through my adu'm t life, one of the things I was always clear about was the Fatigue I was suffering from was not Depression.

I'm very familiar with what Depression is and how it had affected me. But this was very very different.

Now after a year of CFS and no progress, Depression started creeping in again, but I was never in any doubt this Depression was following on the back of the CFS and sense of hopelessness - it was certainly not the Cause.

Unfortunately the editing muddies those waters, and I sighed deeply when I saw that. It's not dissimilar to your being touted as an regular online forum debater.

Anyway, I can't say I blame you for deciding to avoid the topic for a while.

Wishing you every success on your journey

With warmth,

Kim :)

Cusp said...

Well, tbh, I dont really agree with your feeling about Part 2. I was still quite pleased about the balance in this programme. Yes there was an exploration of MT and yes it did seem that Kim and the other lady made some improvement but no-oen said it was a cure and no-one was jumping up and down as they do in 'commercials' for Lightning. Mickel, himself, seemed a genuine man to me. I think the parts of the prog that were about Mt were balanced by the commments from Dr Shepherd and Dr Behan and even Behan now seems to think that SOME pwme have had their condition triggered by some sort of stress event/s. He wasnt saying that the illness was a direct result of stress and a (psychlogical) in ability to handle it: he seemed to be saying that somehow, the body reacted in a particluar way so that it was forever changed and the multiple systems that make many people's body's work in harmony were awry. (At least that's what I understood him to mean). So all in all I think it was a reasonably fair and balanced discussion and here, at least, we looked at each other and said, even with any flaws, those two progs are the best thing we have seen on TV about M.E. in many a year and we should be lobbying the BBC to broadcast across the network: most people will never see it and I could only see it because we have FreeSat.

(Think you're right that from tomorrow i.e 1st FEB, you should have a LONGGGGGGG break from all M.E. related posts and giev yoru self time to recover and explore other avenues x)

nmj said...

Hey Kim, Nice to see you here, interesting you felt the same, am relieved, not just me being critical. As I said before, we cannot even be sure that you and I have the same illness - this is the whole ME v CFS thing - but for the purpose of this prog, we are all under the same banner, and I am not at all diminishing your experience of illness, but I just could not relate at all to what they showed of your Mickel time, so it is good to know you are frustrated too at how it came across.

Cusp, Glad you felt it was balanced! I need to watch again, properly, I just felt I had been edited - and misrepresented slightly - to segue into the hostility thing and that bothered me. But was a strange one for me - it was v. emotional for me seeing Prof Behan, took me right back to those muscle biopsy/EMG days/plasma exchange times, just utter, utter hell on earth. So my response is a very personal one. Was good to see the Royal Free outbreak discussed. I wish they could have said he diagnosed me, that would have added a sense of continuity/narrative, but maybe they were not allowed to?

Yes, he said he is now sure the same post-viral syndrome can be caused by strokes and some post-surgery states, which are specific stressors, but this is surely not the same as saying stress causes ME? x

Yes, I need a long break, I have done my bit for ME awareness for the whole year now I think! Also v happy that TSoM got more exposure, am still thrilled about that.

FiStro said...

Hi Nasim. I completely agree with you about this programme. It was very unbalanced and gave far too much time to Mickel. My husband is a senior producer at a certain British Corporation, and said that they should have at least shown another form of therapy, or someone for whom the therapy didn't work. (I don't think the programme would have got past him without some revision). Dr Mickel's figure of people 'recovered' kept changing as well. He also refers to that figure as people treated and people recovered. Does this mean that everyone he treats then recovers?! If so, that would be truly astonishing. He needs to provide concrete evidence that this therapy works, it seems odd that he hasn't done this if he really has such a high success rate.

And yes, it would have been great to have more of Professor Behan. It was wonderful to hear him talk about his research and his findings. Dr Shepherd was very good again too.

Thank you so much for taking part in the programme. It may not have been perfect, but I think it has helped some people understand M.E. better.

Cusp said...

TBH I dont think anyone on the prog was saying that stress can cause M.E. in the 'its just stress/psychological/ sense. I think what was being said was that POSSIBLY, in some people, stress/trauma cna be a co-factor in changing the body's normal response to a virus/infection so that the body's system is affected and that everything is thrown off balance: hence the interest in the amygdala and hypothalamus which have such important parts to play in the whole orchestration of hormones etc. I think that as pwme (especially 'old-timers' liek you and I) we are now so sensitive to words like 'stress', 'trauma', 'depression' that we hear those terms and hackles are raised.

Kim, I'm sure that depression and M.E or CFS are different. If anyone suffers depression and/or anxiety having been diagnosed with M.E. that's more to do with shock, loss, bereavement. Interesting what you say about how you were edited: it did come across as if part of your CFS (as you are calling it) was to do with the dread of depression returning and it was that which was kind of 'putting the brakes' on everything else. Is that a misrepresentation of what you actually said ?

At any rate, both well done for taking part and Kim, very brave of you to take on a controversial therapy on TV

nmj said...

Hey Fi, Yes, although they showed that Dr Shep and Prof B were not impressed by MT, they really ought to have shown a patient, too, who had not responded, for the sake of balance. Also, from the drama pov, there was no real hook, that is why would have been better to show someone who was *very* ill before and *much* better afterwards, there has to be a leap to keep us engaged - such as the one suggested by Holly. But there was just such a lack of info on her story.

Also, would love to know what Prof B thinks of Rituximab, since I had uveitis, am v interested in the autoimmune aspects of ME, am sure my ME was implicated in that little adventure.

nmj said...

More on Holly's story from MEA thread.


Cusp said...

Think I should add here that I'm no advocate for MT or LT or anything else. I've had M.E. since 1972 and had all the usual flack thrown at me and tried almost any treatment you can think of and none of it has worked so please dont get the wrong impression. I think that one of the most telling things said on the prog was that the term\label 'M.E.' as is stands in the UK atm covers a mutlitude of sins and conditions. It shouldnt but it does and IMO THAT is why some people appear to get well after all sorts of treatments (and I'm including GET, CBT, Lightning, Mickel, Reverse, Gupta...anything you like really) and some dont. What worries me most in many ways is the number of times I hear/read people saying that one has to have 'faith' in a treatment for it to work. For me, if a treatment is supposed to work then it should work whether or not I 'believe' in it e.g. when I had shingles I didnt need to believe that acyclovir would reduce and rid me of symptoms...it just did so.

nmj said...

Got you, Cusp, no worries, my dear, I know you know the score.

I need to watch again, and digest properly, I cried last night after it had broadcast, and I keep seeing myself in my light blue pyjamas (from Miss Selfridge) in the Southern General, my brothers sitting round my bed after the plasma exchange.

It is a big responsibility representing PWME on tv, I had not realised how much, but I still feel confident I did a good job, I just need to go away from internet now. x

Prue said...

Hi Nasim,I'm so sorry last night's programme brought back painful memories of your time at Southern General hosptial and very ill. I do appreciate you so much taking part in the programme and i'm sure you did a great job.

After saying I would watch it all, I confess i haven't yet. I at the moment seem to feel vulnerable and don't know whether i can cope with anything about M.E that might be misleading, such as the discussion of the mickel therapy, even though by all accounts the programme was very good in parts due to stories like yours, the policeman, and Dr Shephard's and Prof Behan's contributions. Rod Liddle's ignorant comments about M.E in the national press and on radio this week have upset me considerably.

I dont know much about Mickel Therapy and as i feel I have classic neurological M.E, I do not feel it will be of help to me, so have not looked into it. Someone on the foggy friends forum shared information a Mickel practitioner gave about the therapy. It sounded completely inappropriate for classic M.E. Here's a snippet (the text in inverted commas is by the practitioner, the text underneath is the poster's astute interpretation):

'"MT teaches that your body is protesting strongly against things in your life that you are deeply unhappy with and, and this is key, that you are not handling in your own best interests. (Now, I realise that this will not be pleasant reading for some, as we have a tendancy to prefer to be the victim rather than accept responsibilty for ourselves - however unwittingly we have caused our own problems, but stay with me nonetheless.)"

So you've caused your ME/CFS/FM by mishandling events. The question as to whether what you have been mishandling is nevertheless a physical disease is not engaged with.

"These situations that we don't handle well can affect the way we handle other things and are often routed in deep fears about something. For instance, those with over-demanding parents who often left their child feeling unable to please them will frequently go to some extremes to please others later on in life and this can often surface in marriage, for instance. Traits from that can also be spotted in the workplace, in friendships and all other areas of life. Before anyone says, 'that's not me!', don't worry, by no means everyone is the same. It's just an example and a good Mickel Therapist will help you find the root cause of your illness and eliminate it".

So it's all emotional stuff.

"Elimination methods are where the problem comes in. Some therapists have been given to understand the one eliminates problem situations simply by avoiding them. So, a person may be encouraged to leave a job, break up a relationship or worse. A good therapist will help the client develop a way to resolve the problem and, if at all possible, stay in the situation. The symptoms are not coming from another person, but from our own unresolved negative emotions about them, or something in that line."

Once again, thanks Nasim for taking part and give yourself a well deserved break from the M.E world, although sadly I know you can't escape the illness itself.

Kim Ayres said...

Cusp - the Depression and CFS were always 2 separate things to me. However, any illness can be made far worse by Depression.

The strategies and tactics I learned from MT I realised will also help with tackling Depression (as well as anxiety and any number of stress disorders).

I remember saying that even if my Fatigue never went away - if I never had to worry about Depression again, then I would consider that a major step forward. And I think this is the bit they used. But taken out of context it muddies the idea and makes it look like I've been dealing with Depression, not Fatigue.

One of the other things I was also disappointed in was MT still wasn't really explained, and it would be easy to be left with the impression that it's some kind of "if you believe it, it will work" thing - which is a bit bollocks. It doesn't require any weird leap of faith.

What it does require is working through the strategies of learning to listen to what your body is telling you and observing how your thoughts are reacting to it, and changing your actions.

Here's an analogy - if you are overweight, short term solutions such as dieting don't work in the long term, as they never address why you are over eating in the first place. So as soon as you stop dieting, you return to your old eating habits and the weight goes back on (as someone who used to be almost 20 stone, trust me on this one). Studies have shown 95 to 98% of people who diet end up back at their original weight (or higher) within 2 to 3 years.

So the only way to successfully lose weight and keep it off is to change your lifestyle. You have to make healthy choices when you eat, in such a way that you can do this for the rest of your life. Not diet - lifestyle change.

Now, do you need belief to sustain this? Perhaps in some ways - if you don't believe eating healthily will help you lose weight, or you don't believe you are capable of adopting that lifestyle, then you won't/can't succeed. But that's not the same as saying you have to have faith in some unknown higher being or the fairies at the bottom of the garden.

Once I understood the principles behind MT, I realised I needed to commit to the strategies if I was to make it work. It's not blind belief, but reasoned commitment that makes the difference.

I am not saying that this will definitely work for everyone, but I can see how it works.

Depending on time commitments and energy levels (much better than they were, but not 100%), I'll be writing more on my blog about the principles behind MT and how I see it working, at some point over the next week or so.

I wanted to see what the programme said about it first, but was disappointed so much was missed out.

In the meantime - Nasim and Cusp - I have a post I'm probably going to be putting up later today about some of the division in the ME/CFS community, which is something of a controlled angry rant at some of the language I've seen used, which downgrades CFS as an illness (I have ME, but you only have CFS kind of thing).

Please note it is not addressed at either of you - I know you both see ME as a separate disorder to CFS, but see it as different, not less-than. It is those who keep implying, or outright saying, it is less-than that I am railing against.

My apologies for such a long comment


nmj said...

Thank you so much to the person who emailed this comment:

Hi Nasim

I just tried to post a comment on your blog re the Alba documentary but didn't manage it (maybe a technical error - quite possibly mine, or my cognitive dysfunction problems). Anyway I thought I would email you what I would have said if I'd been able to comment. Please feel free to add this to comments on your blog if you would like to:

Nasim, you were the star of the show (both parts). What you said was succinct and incisive - spot on. I share your disappointment re Part 2. There was not much from ME experts (Dr Behan’s airtime was very limited). There was nothing about e.g. the Norwegian Rituximab trials (though this might have been too recent to have been included). There was nothing from the likes of Malcolm Hooper or Jonathan Kerr. None of the thousands of ME biomedical research papers by experts such as Drs Hyde, Chia, Kogelnik, Montoya etc were referred to in order to counterbalance the bias towards MT. And of course, there was no-one who had tried MT and found it didn’t work. Whilst it is good that there are programmes exploring the disease, a better balanced, more informed programme could have done so much more. The best thing that came out of it for me is that I have now ordered a copy of your book and I am looking forward to reading it.

Best wishes


homegirl said...

Nasim I think you did brilliantly, well done and thank you.

As i've said before elsewhere and as is confirmed to me by Prue's post above...

The description she gave of "issues in your life not handled well"- and your system producing symptoms because of it........ err... that is exactly what a psychiatrist would describe as somatisation! And i'm pretty sure a certain simon we know of would endorse it as a description of a 'somatic functional disorder':-/

But in addition to that, imo MT practitioners should register themselves with the BACP, because whats described in Prue/Kims post is psychotherapy. But they cant because they have no psych training. It's not ok imho. Because
If they get someone who is traumatised (and since neuro ME is a neuro illness i see no reason why you cannot have ME and *also* have a traumatic past) and dissociated (disconnected from) that trauma, then digging around in this stuff will likely make them reconnect.... and someone untrained has the likelyhood of doing further damage searching through someone's "deep fears" about something. -If deep fears are rooted in trauma/abuse then God help the poor sufferer being psychologically proded at by people who are 'amateur psychotherapists'.

but anyway I wish all the best to those it's helped including Kim, and hope that the MTherapists will learn about trauma perhaps... so that when someone in their 'chair' suddenly realises that they were abused and have repressed it, and they suddenly reconnect with their memories and all that that involves.... they'll know how to handle it and not do the poor patient damage.

NB- not suggesting ME or CFS have anything specifically to do with childhood trauma, any more than people with MS & heart disease... people with early traumatic history are at greater risk for all kinds of diseases eg heart disease/diabetes/cancer, so it stands to reason that some people with ME will have such a history.

Digitalesse said...

NMJ, you looked fab - and very chic in navy blue - and came across very well. I know from previous experience how journalists can tweak the vocabulary just a wee bit and somehow create a very different meaning. I understand your frustration.

I thought the Mickel Therapy ideas were interesting but more akin to CBT from what I could tell, although MT appeared to take a different route to get to the same destination ie a more optimisic attitude about the future. Neither of the two people said they were cured.

Like you, I did roll my eyes when Dr M said he saw ME/FM/chronic fatigue as 'fatigue disorders'. When you add depression or anxiety disorders, the picture gets more complicated. Throw in sick building syndrome, electo pollution and a few of the worried well… There's plenty of scope for placebo cures if ME is more of a dustbin diagnosis. So I always want to know WHAT is being treated and HOW. I don't want a narrative or someone's trade marked pet theory of ME.

As for the lady whose doctor said she was ill because she didn't have enough 'me-time'… I have too much of that! Again, that's a CBT-like idea ie taking time out to rest and also time for enjoyable activities. But it's hardly 'the cure'. Perhaps MT might allow her to take more time out for herself but it's a rather spendy and circuitous route.

I don't want to be too cynical though. There does seem to be some medically based research evidence that practices like relaxation, meditation and mindfulness can help correct the hormonal/cortisol/adrenalin imbalances of ME. (And these cost nothing, remember.) Our thoughts feelings can also upset this balance so perhaps therapies like MT, Gupta and CBT can help too - but to what extent is probably dependent on the individual's emotional make up. It's not one-size-fits-all but I can see why some people make improvements and others see no difference. It's back to that mix-and-match 'fatigue disorder' non-definition.

Enjoy your 'not ME'-time, NMJ. Take the Green & Black's cure. It's on me.

nmj said...

Hey Prue, I think it is worth watching, both parts, no one is, thankfully, promoting false illness beliefs(!) - yes, the MT could have been more balanced, but ten mins of Prof Behan - talking about Royal Free! - is priceless, where else are you going to find that! And while I too remain pretty cynical about MT, no one is forcing you do to it (not like NICE and CBT), it is purely a matter of choice.

Hey Kim, Interesting to hear your pov as someone with CFS being 'dissed' by some PWME - that is def worth talking about, and I have just commented on your post on ME and CFS, tried to put it in context. Though I think that would need a Panoroma 6-hr special to explain. I think Alba demonstrated that the illnesses are conflated and there is great confusion all around as to what is what...

Hey TRS, I too have been finding it hard to comment on blogs, I find if you try to publish after previewing it doesn't work, but if you go straight to publish it works. Thanks again for your very kind comments about my role on Alba prog. I think they focused on Mickel simply because David Mickel is Scottish and this is the Gaelic channel, I am not sure an indepth review of all the ME experts would have had much of an audience for a popular documentary/human interest series, but I would, of course, love such a programme to be aired! I hope you enjoy the novel.

Hey Homegirl and Dig, Thanks for your positive comments, Dig, that blue cardiagan is ancient, but I love it!

I certainly learned through appearing on Alba about the way documentaries are shaped and though I am mainly v pleased about how I was presented, I would maybe want to see the doc next time before it was broadcast - if that was possible.

nmj said...

ps. Prue & Homegirl, Just to say I have not yet read the article Prue has put up on MT. My head just can't take it all in at moment.

I think if you have ME *and* trauma that puts you in a different category than just neuroimmune illness and you would need to be v careful. I'd say there are pitfalls, for sure, but you have to arm yourself with all the info before you embark on *any* alternative therapy.

Still, for all my scepticism, I think David Mickel himself comes across as someone who wants to help, rather than the used car salesman I was expecting. Of course I don't agree at all that ME is a 'fatigue disorder' or that is it *not* triggered by a virus, that is nonsensical to me.

I remain kind of curious as to how two once-severe PWME (my friend, and Holly, the woman in the prog) have found it has helped them so radically. I do think pregnancy *must* play a role, it seems to be able to 'reset' faulty autoimmune mechanisms, so as I have said elsewhere, I think there must be other factors at play, it is not pure MT.

If there were actual science/validation behind MT I would maybe try it but until then am afraid it's not for me, at moment its success is purely anecdotal.

I have now tweaked my blog post since re-watching part two, highlighted tweaks in bold.