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ME Awareness Week

 
 
_pin
21:51 / 11.05.02
It's ME Awareness Week this week. For anyone who doesn't know (haven't I said all ths enough yet?!), my girlfriend has ME and I fear for her and love her daily.

So... be aware. Please? It would mean a lot to me.
 
 
Shortfatdyke
07:01 / 12.05.02
someone i used to be very close to has ME and she is now barely able to get around. it's putting a terrible strain on her relationship - basically her girlfriend has started screwing around. it's horrible. ME is still treated as a non-illness (like rsi) by too many. i'm also aware of this condition on a professional level - plenty of teachers fighting for retirement on grounds of having ME and being sneered at.

my best wishes to your g/f.
 
 
Ganesh
10:34 / 12.05.02
It's not treated as a "non-illness"; it's treated as a syndrome cluster for which no objective clinical test has been found, no consistent organic basis discovered and no straightforward 'cure' known. There's an important difference.
 
 
that
10:42 / 12.05.02
Best wishes to you and your girlfriend, Glint...
 
 
Margin Walker
11:53 / 12.05.02
Yeah, hope she's faring well.

By the way, is this ME/Chronic Fatigue Syndrome the same thing (or at least one of the things) that Persian Gulf soldiers were diagnosed with during the last couple of years? I probably should know something like this, but I blame my relative good health for my ignorance.

% Way to stay healthy, body. %
 
 
Shortfatdyke
12:00 / 12.05.02
ganesh - i was talking really about public opinion, rather than medical. i *do* come across people who see it as a 'middle class skivers' syndrome - teachers applying for ill health retirement on grounds of ME often have the added battle of their colleagues not believing they're really ill.
 
 
Cloudhands
15:07 / 12.05.02
Glint - has your girlfriend tried yoga or tai chi? I had chronic fatigue syndrome- not really full blown M.E for about sixth months. I started doing yoga and I instantly made an amazing improvement.
 
 
Ganesh
16:29 / 12.05.02
In my own experience of individuals with chronic fatigue syndromes, they're as much to blame for the frankly unhelpful mind-body split as anyone else; I've yet to meet (in my professional life) an "ME" sufferer who's happy to see me - at best, they've been distrustful and cynical (because 'psychiatrist' = 'in the mind' = 'not real' = 'no-one believes I'm unwell'), at worst they've been openly hostile. If such individuals (and yes, I'm aware I'm generalising wildly here) could find it within themselves to stop viewing psychiatrists and psychologists as The Enemy and accept that all illnesses have both physical and psychological elements, it might be possible to find some common ground.
 
 
Ganesh
16:39 / 12.05.02
Margin: who knows? There's a whole group of syndromes out there for which no consistent organic basis can be uncovered and which are, essentially, based solely on the subjective account of the "sufferer". When someone says they're ill and no reliable test exists to determine one way or the other, what should happen? How should society handle such phenomena?

All ideas gratefully accepted.
 
 
w1rebaby
16:46 / 12.05.02
I remember hearing about CFS resulting as the result of post-viral syndromes... I would think it was more likely that "Gulf War Syndrome" was either coming from PTSD, or was a result of the biowarfare vaccines that they were exposed to, or depleted uranium poisoning. There seem to be a whole lot of different symptoms that are talked about under the same name.

Ganesh: to be fair, a lot of patients do have good reasons for thinking that when they see a psychiatrist they are being "brushed off". If you've ever seen a GP for anything which might have a psychological component, they tend not to disguise the fact that they don't consider it real illness, and patients are going to be referred from their GPs in most cases. I think I've only ever seen one GP who I actually believed gave a shit about my condition. Hey, not to bash GPs, it's not a fun job, but people can tell what you really think about them. Not to mention the inherent prejudice in society regarding psychological illness.
 
 
Ganesh
16:51 / 12.05.02
Sure. I'm aware of all those sources of 'baggage' before I meet the person who's been referred to me. It seems to me, however, that those individuals who've been (often self-) diagnosed with CFS have more invested in the concept of 'physical = real, psychological = fake' than any other subgroup of psychiatric referral - and their consequent hostility makes them extremely difficult to work with.
 
 
Ganesh
16:53 / 12.05.02
On the subject of viruses, no consistent viral element has ever been found for either condition.
 
 
w1rebaby
16:55 / 12.05.02
I can well believe that, but I would assume that was the case with anyone with a tendency to somatise. (I think a lot don't ever get to psychiatrists in the first place, since it's easier to treat them symptomatically.)
 
 
Ganesh
17:06 / 12.05.02
Yes and no. Many somatisers are basically resistant to psychiatric interpretations of their feelings/sensations. CFS patients, however, seem altogether angrier, more scornful of the psychiatric profession. I suspect that this derives from a greater sense of entitlement which, in turn, relates to the greater prevalence of CFS (in contrast to somatic disorders in general) among the higher socioeconomic classes. I think they're also more ambivalent than somatisers...
 
 
w1rebaby
18:19 / 12.05.02
Hmm. I see what you're saying, and the people I know personally with CFS kind of fit that bill (not necessarily the socio-economic, in terms of attitude) but I also wonder if the fact that symptomatic relief for CFS is harder to obtain might have something to do with it as well?

For instance, someone with a depressive illness with predominantly mood-based symptoms would find it easy to accept that it's a psychological problem and should be treated by psychiatrists. Someone with, say, asthma that has basically psychosomatic causes would be treated for the asthma, but also hopefully referred to a psychiatrist; they could still think to themselves "my illness is being addressed, they're not being treated as imaginary, but there are underlying causes that need to be looked at".

Whereas someone with CFS has physical sensations for which they have no immediate relief, but are still physical. They might then feel "I am feeling physically bad, but nobody is addressing that, they don't know what to do with me so they're saying it's psychological", making them bitter and resentful.

I wonder whether, if there was a suitable "science" explanation for why CFS could be caused by psychological factors, people would be more willing to accept psychiatric treatment, in the way that some people seem to be much happier saying "I have a serotonin imbalance" than "I'm depressed".

A more holistic attitude in which psychiatry was seen as just another specialty within medicine, rather than the split between "dealing with the body and dealing with the attitude", would of course be ideal, but that's a loooong term goal. I sometimes hope that in a decade's time, the fact that so many people in positions of influence will have had psychiatric treatment might influence attitudes towards it.
 
 
Ganesh
18:49 / 12.05.02
I'm sure that's part of it. When I worked in liaison psychiatry I'd usually avoid overly 'psychiatric' interpretations but explain my role in terms of all illnesses having an emotional element - being anxious, for example, tends to make us experience pain more acutely - and while I couldn't offer a cure for their illness, I might be able to help moderate the pain/anxiety/fatigue.

CFS patients tended to reject even that line of reasoning and seemed, on average, more invested in a dichotomous all-or-none physical-or-'in the head' view of illness. I'm pretty sure there's been research carried out which broadly backed this up - although God knows I'd be hard-pushed to put my finger on it.

The socioeconomic profile is evening out as the condition (or, IMHO, conditions) gain more and more press coverage - which is, in itself, interesting.

As you say, some of the general anger may arise from the fact that no consistent organic deficit or imbalance can be found to account for chronic fatigue states - and there's no easy 'serotonin imbalance' style euphemism at hand to give treatment a comfortingly 'medical' gloss. I'm sure there's also frustration at the fact that, faced with an increasing demand for treatment/explanation physicians have, in desperation, recommended try-it-and-see measures (bed rest, for example) which have subsequently proved ineffective. Even so, I'm not sure that this in itself accounts for CFS sufferers' generally low tolerance of medical failure and their sensitivity to feeling 'fobbed off'...

My own personal opinion (and I emphasise 'personal opinion') is that Chronic Fatigue Syndrome represents one of those culture-bound 'expressions of distress' which arise mysteriously among populations at certain historical junctures and disappear just as abruptly. While the population of individuals labelled 'ME' is probably a heterogeneous one, I'd say the largest number develop chronic fatigue symptoms as a sort of atypical depression afflicting people who a) face a life situation which is, in some way, stressful, b) have a tendency to somatise their distress, and c) have no easily-identifiable way of escaping their situation.

I've absolutely no idea where the 'biochemical lesion' might lie but it's worth noting that fatigue, low mood, poor sleep and impaired energy levels are also core symptoms of depression and, as such, it's reasonable to speculate that serotonin and noradrenaline may play a part. If memory serves, Simon Wesselly of the Maudsley, reviewing the various treatment avenues, concluded that SSRI antidepressants, cognitive behaviour therapy and a graded exercise programme proved helpful in up to 70% of cases.

If it is a 'disease of modern culture', I guess we have to wait until it evolves into something else...
 
 
Ganesh
19:09 / 12.05.02
The increasing number of children being diagnosed with CFS is worrying; I'd be extre-e-emely interested to read a suitably rigorous review of the medical/psychiatric/personality profiles of their parents...

I recall one particular case (from my time in Child & Family Psychiatry) of a woman who'd diagnosed her eight-year-old son with both Chronic Fatigue Syndrome and Attention Deficit Hyperactivity Disorder! In an increasingly medicalised society where such labels are relatively freely available, I can't help but worry about the outcome for all these kids whose behaviour's been pathologised at such an early stage of their development.
 
 
suds
19:11 / 12.05.02
my housemate has ME and i worry about him, too.
 
 
Less searchable M0rd4nt
19:17 / 12.05.02
A little off topic, and I hope it won't be taken the wrong way, but maybe we could have the 'Lith magickos cook something up for Glint and Girl?
 
 
Ganesh
19:22 / 12.05.02
Mordant, I think that's as good a 'treatment option' as any...
 
  
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