Michael Sharpe left a comment last week on this weblog in response to my entry in February quoting statements from a public lecture of his at Strathclyde University some years ago. I’m always one to believe in engaging with those prepared to debate openly as your response seems to indicate Michael, so I’d invite you to respond to this. I felt it important enough to devote what’s probably a whole day or two’s energy to this then rest, as I think this is the crucial debate on which the fate of people with ME in the UK depend. I also felt this important enough to deserve a new entry – not to steal the headline with my response, but you have your inaugural lectures and public engagements, and all I currently have is this weblog as podium.

For those who need some background to the ME and CFS issues in the UK particularly, you may want to scan this entry first (unashamedly my take: Michael’s are available online too). Michael is a Professor of Psychological Medicine and Symptoms Research, and influential in the school of thought along with his colleague Professor Wessely and others that proposes somatic explanations for people with ME, or CFS: in other words, that the perpetuation of my illness is due to psychological reasons rather than physical conditions worthy of investigation (other than that of simple deconditioning), and that the correct course of treatment is to realign my thinking and attitudes to my illness with cognitive behavioural therapy (CBT), along with graded exercise therapy (GET). I don’t think that’s an inaccurate summary, but I’m very open to being corrected. The theory is also applied to many other supposedly “medically unexplained symptoms”; as an example Professor Wessely was influential several years ago in promulgating the view that Gulf War Syndrome may be a form of false belief. Wessely classes many such conditions as “psychogenic illnesses”, comparing them to outbreaks of hysteria over “spirits and demons” (New England Journal Of Medicine 2000(342)).

Michael’s comment he posted here was:

A very well constructed website. And I agree that patients with CFS and related condition suffer as the undeserving sick of modern society.
But if you read Pygmalion by Bernard Shaw you will understand that that is a criticism of social morals and conventions – not a literal statement!
MS

Firstly, I’ve read Shaw, and with regard directly to the statement above, I confess that I’ve read, and re-read your original statements dozens of times now in an effort to see in what sense you meant them as supportive. The clouds have not yet cleared, and no light has dawned I’m afraid. I wonder if therefore you could help me read it your way? For others, the context from Pygmalion is a short monologue by Doolittle, father of Eliza, in which he’s attempting to extract five pounds from Higgins and Pickering for his daughter. There’s a copy of the monologue here and the context within the play here.

I hope you don’t mind a little deconstructing to help me better understand your original intentions linguistically. To do things backwards, let’s deal with the last sentence of your attributed statements from the 1999 lecture first:

“Those who cannot be fitted into a scheme of objective bodily illness yet refuse to be placed into and accept the stigma of mental illness remain the undeserving sick of our society and our health service.”

The first thing to note is that nowhere does Shaw use the phrase “undeserving sick” in Pygmalion – the phrase on Doolittle’s tongue is “undeserving poor”. But I know you’re aware of this, as you’ve shown a particular concern recently to defend your statement in other arenas by pointing this out. I’m wondering how an experienced speaker could expect his listeners to understand, on the hoof, that such a syntactically straightforward sentence could possible be an ironic reference to a short monologue from a play from 1916, when you only use one word in common with that play, “undeserving”, with seemingly no referential clause.

In other responses I’ve seen, you’ve echoed the same argument as you make here, that you always meant this to be understood as an ironic quotation, on one occasion stating:

… when I referred to patients who are currently poorly provided for both by psychiatry and by medicine as “to paraphrase Bernard Shaw, the undeserving sick”.

I don’t understand your use of quotation marks above: are you saying these are the exact words you used in the public lecture in 1999? If so, clearly you’ve been misquoted in every other account, and did indeed attempt to supply sufficient context for your listeners to understand the irony of this comment, as every other account misses out any direct reference to Shaw.

Even were that true however, backtracking to the attributed statement preceding this in your lecture we run into confusions over your intended message again:

“Purchasers and Health Care providers with hard pressed budgets are understandably reluctant to spend money on patients who are not going to die and for whom there is controversy about the ‘reality’ of their condition (and who) are in this sense undeserving of treatment.”

Having read and re-read, I just can’t see how the words “… are in this sense undeserving of treatment” can be seen as a quotation of Shaw’s Doolittle’s “undeserving”, and therefore meant to be, in your words here, a “criticism of social morals and conventions – not a literal statement!”. It seems to me this can’t be read as anything other than a literal statement of your views, or at least, that you can’t expect your listeners and expected future readers to see it in any other way. I’m conscious of the bracketed words preceding it being indicative of something omitted, so if these clarified how you made this clear as a criticism of social morals rather than a literal view of yours that we are undeserving of care, please do take this opportunity to correct or amplify the quotation above. If not, put briefly: in exactly what sense do you, a member of a caring profession, believe that ME/CFS patients are undeserving of treatment, simple because we’re not going to die, and because we have a condition about which there is controversy (notably originating from your own school)?

Adding this preceding sentence to the first one quoted, it’s very hard for me to understand how, as you crafted this lecture, you expected your audience to understand these highly sensitive statements to not be your own, literal, views of patients’ status. It further darkens your portrayal of this lecture as benign and on the patient’s side to consider the context of other statements at the same lecture; for instance:

“I shall argue that patients themselves have played a part in denying themselves this type of treatment.”

True, if you mean purely treatment designed to change our minds, we may have done so, in the same way a man with a broken leg may resist using his last pound to pay a shaman rather than buy a splint. But can’t you see what effect this kind of tone will have on the tax-collector who decides where the various pounds go? And I know you believe strongly in the supposed “witchdoctor” effect a good physician can bring to a doctor-patient relationship, that of trust and belief in the efficacy of cure. Not that I agree for one second that witchdoctory could be money better spent on ME than actually looking down microscopes, but did it not occur to you that some of those same patients might actually read any one of these rather cavalier statements, which quite seriously (for this reader at least) put a serious rift between psychologist and potential subject? That such scatter-gun comments that (let’s be honest) class the patient in an entirely different category of mental state from the physician based on no factual evidence whatsoever other than that they show physical signs of illness, further serve only to break this bond of trust? It’s not like your lectures are delivered to MI6 in a sealed envelope.

In spite of your assurances that such statements are to help the patient out of the darkness of false illness beliefs and into the light of restructured thinking and the dissolution of the mirage of illness, surely any sensitive intelligent academic in a caring profession could see what effect such statements would have on a wider audience of decision makers largely ignorant of the condition?

Not to paint you into a corner, Michael, I’ll point out to others that Professor Wessely of course propagates similar views specifically about what he calls CFS with similar tone:

“Validation is needed from the doctor. Once that is granted, the patient may assume the privileges of the sick role (sympathy, time off work, benefits etc).– Reviews in Medical Microbiology 1992(3)

Mention should be made here concerning the character Shaw paints of the person you say you are quoting: Doolittle. As a psychologist, you must be painfully aware of how careful your approach must be to those whose view of the world you believe to be aberrant or over-sensitised. It seems odd therefore, given your professed sympathy with those with ME/CFS, that you chose to highlight their plight with reference to a rather self-pitying monologue, which represents the voice of someone with a conscious wish to perpetuate his own poor state as a vehicle to personal gain. Doolittle states as he grafts for his five quid: “I ain’t pretending to be deserving. I’m undeserving; and I mean to go on being undeserving. I like it; and that’s the truth”. This resonates jarringly with some of your own documented views about why people with ME/CFS consciously or subconsciously perpetuate their illness:

“Many patients receive financial benefits and payments which may be contingent on their remaining unwell. Recovery may therefore pose a threat of financial loss.”
– Gen Hosp Psychiatry 1997(19)

“These patients want a medical diagnosis for a number of reasons. First, it allows them to negotiate reduced demands and increased care from family, friends and employer.”
– Gen Hosp Psychiatry 1998(20)

It does make me fleetingly wonder if Doolittle’s “I mean to go on being undeserving. I like it.” was in your mind when choosing that quote. Or maybe subconsciously?

This last point highlights the problem I have with writing this. You’ve chosen to engage by replying to my post, but I’d like to understand in what sense you can engage in such debate with someone who, according to your beliefs, is perpetuating her own state of illness, consciously or subconsciously, in a wish to cling to some form of financial/emotional gain she receive as a result. How can you engage in this with someone you believe to be under such an aberrant belief system that it keeps me largely in bed, causes utter exhaustion, very specific pain and flu-type symptoms so strong that sometimes I can barely move my hand for a glass of water, a myriad of seeming indicators of neurological, aural, ophthalmic, immunological and cardiac abnormalities, and can even lower my white blood cell count so much that an NHS-approved lab repeatedly requests multiple re-tests? In what sense can you treat me as a coherent free agent in this debate in which I unashamedly have a self-interest (regaining my previous health and life) and give my comments the credit I believe they deserve as an equal, rather than standing by my bed and nodding sympathetically? I suppose your reply or lack of it to this will indicate your view on this.

The nub of the issue for me is: is what Professors Wessely, Sharpe and co. do real science, and could it therefore make me well? As someone with a lifelong scientific academic rearing, I’m always aware of the importance of the principle of falsifiability. The problem (and for you, the strength) with your school’s proposition of what CFS by your various definitions is, is that it, like a religious theory, can seemingly fit any contradictory fact or form of patient behaviour. I might for instance ask in what sense you can believe I am seeking to perpetuate my sickness to gain financially, when I stand on the threshold of quite possibly losing a career I love, am skilled at, that paid me well financially and emotionally, and that I would return to with leaps and bounds tomorrow if I could. It can’t help making me think (forgive me) how you would feel should you be bed-bound tomorrow, on the brink of losing your own professorship, and having to wade through an incapacity benefit form in order to maintain some livelihood: I think you’d feel the same. Or do you consider yourself as potentially susceptible to somatic illness for personal gain? But, your answer to this may be “Ahh, in your case it may not be for financial gain. Maybe you have something to gain emotionally from support from family and friends”. Well, my family live 4 hours away by car. My friends are a mourned loss by and large, and the few locally who want to visit usually can’t, much to my grief and theirs, because the 48-hour kickback physically threatens to further my downward spiral of illness and further put to an end the lingering promise of returning to my current employment.

I can already hear you responding “Ahh, well maybe in your case you’ve become so accustomed to inactivity that in your deconditioned state, you’re wrongly or irrationally afraid that any activity will cause further illusionary illness” – and I can start to point out how a trip to the hospital last week (I insisted on going) is still costing me dearly with loss of sleep, pain, and physical malaise; but I can already hear you interrupting that maybe I did too much and I need a program of CBT and graded exercise therapy. I can try to point out that I spent many thousands on my own cognitive therapy privately during my decade or so of illness, and how I graded my own exercise long before this massive relapse, working upwards in steps to 30 minutes brisk walk a day when I could, gruelling though it could be. But wait, I can hear you already spinning the dial again, and suggesting it’s because I have such a set belief in an organic origin to my disease that this predicts continued perpetration of symptoms, I talk to too many other people with ME, I dwell on my supposed illness state too much. And I can respond that a recent study by UCL showed that patients with chronic conditions do better in online communities than, say, concentrating on daytime TV to take their minds off it all, and state my incredulity that researchers can miss the obvious backward connection that long-term sufferers of life-shattering conditions might look for organic agents in their illness, giving that thinking therapies and anti-depressants have failed them; and thus that research will indeed show that believing you have an organic illness predicts long-term illness because you are actually physically ill! But then you can hear my voice raising slightly, and you can silently tick a “neurotic” or “resistant” box in your head, and we start all over again.

Similarly, if I describe any physical pain, by type or location, it seemingly can be put down to a somatic condition or thought-disorder. Presumably losing my high-frequency hearing in my inner ear, as measured by audiograms, could have the same root psychological cause? When I hear psychologists nervously stating that Dr Gow and Dr Kerr’s recent discoveries of gene expression abnormalities in ME patients could be triggered by attitudinal states, I know the apaches really are at the fort’s gates. “God of the gaps” theory, I think it used to be called.

This is where my doubt in the scientific falsifiability of your scientific method rests: any fact can fit. If a theory can’t be falsified by any conceivably theoretical fact, it gains the status of a religion or… unsupported belief-system. If it can explain everything, it explains nothing. My view is that the fatal cracks down the middle of this set of theories that will render it in time a minor diversion of historical curiosity only for those with an interest in scientific fads are two-fold: (1) that the content is consistently more opinion, less facts, and (2) that it’s applied broad-brush to an ill-defined population of sufferers termed “chronic fatigue”, with no reference to exacting criteria (which exist, contrary to claims) to define subsets. Surely you’d do better to define your population groups like other scientists do with exacting requirement, instead of claiming it can’t be done (others can), and then working on those who clearly can be helped by CBT and possibly GET: those for whom depression is clearly a root cause, for instance?
Those of us with physical, chronic illness are poisoning your statistics.

Just how bendy the somatic explanation of ME/CFS is can be demonstrated so easily by flipping it round. Quite seriously, are you sure your own beliefs about CFS aren’t founded on self-perpetuating false systems based on conscious or sub-conscious personal gain? Does that sound insulting? I’m sorry if it does, but that’s where I am when I read your words. Is it not conceivable that you’re clinging to this illogical belief system because you have so much to lose if you let it go? Your reputation, feelings of personal worth, family and collegiate respect, etc.? I use the word “you” in the plural of course: your school of thought. Are you sure your beliefs aren’t false, perpetuated for personal gain, and have you considered trying some independent CBT to find out?

And I have to ask myself: if you’re wrong and my illness is the result of a continuing biological agent or process, still, what harm are you doing really, beetling about your office and shuffling fictional papers between your colleagues and sipping drinks at public lectures? The answer is: a lot. To quote you again:

“Reports from doctors for employers, insurance companies and benefit agencies could reinforce beliefs and behaviour to delay full recovery.” – JRCP 2000(34)

Meaning it’s probably better if doctors don’t look for physical abnormalities or signs of disease. Your school of thought has reportedly managed to aquire the entire £11m allocated by the government to help those of us with this condition, leaving internationally groundbreaking biological research by people like Dr Spence, Dr Gow and Dr Kerr to exist on charity alone; work that will undoubtedly result in a definitive diagnostic for ME in the next few years should they get a funding stream, leaving you the option only of a nighttime flit to a new group of unsuspecting suffers, whose symptoms are currently “medically unexplained” and therefore somatic. These are the very real effects on the reported quarter of a million people with ME/CFS in the UK that your plasticine models of psychologically self-perpetuating illness create. In many many quotes, you and your colleagues continue to actively discourage any investigation of physical abnormalities:

“In most cases of chronic fatigue, few laboratory investigations are necessary.” – Occup Med 1997(47)

“In clinical practice, no additional tests, including laboratory tests and neuro-imaging studies, can be recommended.” – Ann Int Med 1992(121)

Your school of thought also of course massively emphasises CBT and GET as “the only effective therapies”: but study after study, patient group report, and GP’s experiences are showing otherwise. I’m sure you’re aware that a survey by the 25% ME Group (survey page, survey – doc format) showed that a staggeringly high 82% who had faithfully tried graded exercise therapy as recommended, reported not that it hadn’t substantially helped, but that it had made them worse (and that’s very ill for people in that group). In this light, the fact that 93% said CBT was just “unhelpful” looks like a goal by the away team. This is all money that didn’t go to medical researchers and carers for symptomatic relief and biological research: money meant to be for the relief of sickness seemingly making very sick people sicker.

Of course, an outsider can’t jump out of the worldview of any ardent holder of true faith try as they might:

“The majority of patients with CFS have no doubt how they prefer their conditions to be seen….the vehemence with which many patients insist that their illness is medical rather than psychiatric has become one of the hallmarks of the condition.”
– your same lecture at Strathclyde University 1999

So our illness being caused by errant beliefs is a given, and if we cast any doubt on this they’re definitely causing it. One wonders why so many millions of people worldwide exhibiting a very similar specific symptom set would do this, but I guess you must have some really concrete evidence that it’s not just a physically perpetrated condition we can’t clearly outline yet but instead faulty thinking? Because otherwise, some of the statements above and the strong recommendations not to investigate physically or spend funds on this might look positively damaging to the unfortunate recipients of yours and your colleagues’ advice in a few years’ time. Going so far as to encourage the confiscation of test tubes in the name of providing me with care does seem to be going a touch too far to me.

But I suppose this whole response to your comment will fall into the same category of behaviour outlined above: if I protest, it must be true; if I float, I’m a witch. Glug.

Finally, thank you for your favourable comment about my weblog, but I can’t help wondering how you can decide my website is “well constructed” without visiting more entries than the one referring to yourself for more than two minutes, unless my web server logs lie or I’m too shattered to interpret them correctly. I mean, the rest of my site may be utter garbage, libel, or pornography: you may want to be careful what you compliment, as unscrupulous people might start quoting unguarded statements from professors on flyers and press releases, rather like people select favourable quotes on movie posters. As your web browser blocked the referer, I can’t tell how you came upon my weblog, so can only guess for now that you were googling for your own name, but I’d be interested to know if it was via another route. But surely, if you consider the illness we call ME or CFS a false belief state rather than organic illness, as a psychologist your scientific curiosity must be piqued enough by the presence of the weblogs of ME sufferers to wish to study them in more depth? Such weblogs do after all represent the internal mindsets of such objects of study as myself, or indeed (equally interestingly, surely?) our conscious public presentation? It therefore surprises me you didn’t read more than your own page, but thank you for the compliment anyway.

To use history to inform the present, my guess is that your own salary is assured: psychologists with a concern that seemingly biologically-triggered and sustained illness states may in fact be instead largely psychologically maintained have shown themselves nimble-footed in moving from patient group to patient group as biological causes and perpetuating elements are discovered. In the past, to the best of my knowledge, schizophrenia, Parkinson’s, MS and stomach ulcers have all been attributed to primary psychological causes before a comprehensive trail of organic illness has been traced out through rigorous research work. The school of thought for somatic explanations of illness has always survived these blows, and I’m sure will continue to find new avenues for adventure when the increasingly deafening evidence for organic agents of disease in ME/CFS reaches its inevitable conclusion. To echo your own quotation with the same transposition of words, but from another speaker who should have known better: “the sick are always with us”. I’ll attribute it to save confusion later: John 12:8. He also said, almost as if he were working in a graded exercise/CBT clinic “take up thy bed and walk” – if only it were that easy.

Postscript: some commenters have suggested to my surprise that this entry may be of interest to a wider audience, so I’ve slightly restructured it for more general consumption at the following link: https://fumblings.com/msharpe – please use this link if wishing to refer to this article from another website or publication. And please drop me a line if you do!

Apology of an entry: to say that I can’t, just now. I’m in the midst of yet another snow-storm of new symptoms which are now taking away my remaining chances of keeping in touch with people: clusters of new, odd migraine-like but more severe neurological symptoms; some blurred vision in one eye; and sudden onset tingles/pain in fingers and hands. The latter show up most when using my laptop, which again proves that something hates me enough to take away my only link with friends, via email and this place. I’d put it down to RSI/carpal tunnel syndrome if it wasn’t that it occurred in my right hand and then within 24 hours my left too. I’ll have to stop typing this soon as it feels too dangerous and the jabs of “ouch” too jarring.

My pay goes to zilch on Tuesday: I have to enter the mire of incapacity benefit, and David Blunkett’s proposed schemes to use lie detectors to determine if I’m a fraud, examine my water, gas and tv bills to see if I’m a fraud, and reams of assessors who nothing about ME to see if I’m a… fraud. Hey, maybe I’m a fraud.

The predominant feeling is, honestly, a return of despair. At these clusters of symptoms, at the poker-faces of my GPs, at the lack of action, at the fear of what all these seemingly neuro symptoms could be on top of the gastric onset, loss of hearing, tinnitus. Surely there’s a clinical picture here someone could see? I’ve suggested TIA’s/mini strokes, viral infections, bacterial infections: but they want to call everything I could conceivably get “chronic fatigue” (I have to add the “… syndrome”, increasingly sharply, and suggest they read the World Health Org’s classification of disease). I don’t believe for a second that what’s happened to me in the last 12 months is “chronic fatigue”: I believe and have told them that I believe I’m under attack by some infectious agent or other, or a neurological condition. No investigation ensues, my GP suggests the ludicrous “reverse therapy” (you’ll have to Google I’m afraid), and I withdraw, foetal and in exhaustion, to hope I will fight on another day.

I hope those friends who don’t hear from me get here to see this as my christmas letter to explain my email silence, and I hope you don’t stop thinking of me as a friend. I can read your mails and comments but not reply for now, mostly. Maybe my hands will get better; maybe my eye less blurred; maybe my weight, strength, white blood cell count and hope return. I remember all those maybe’s in that entry here months ago, where I tried to turn them back into hope of renewal. But it’s autumn now. There’s a million things to suggest and I and my partner have probably only tried a thousand of them – but right now I feel like someone half way up a mountain, in a blizzard, deciding maybe now’s the time to let sleep and snow take over.

I’d like to start this long overdue update with the pertinent fact that if you search for “fit teenage sex kittens“ on Yahoo UK and Ireland, as someone clearly did to get here from looking at my stats, this site comes up as the 13th highest hit in the world. I’m rather proud. Hopefully by the time you read this it’ll be even higher up the sex kitten charts, on the basis that I’ve just mentioned it again.

I hope my visitor wasn’t too disappointed. If my visitor does happen to return though, I can now provide him or her with what they wanted: voila, Mitsou and Frog (aka “Scout”), our new, eminently fit, definitely teenage and very sexy kittens. Click for more candid shots, and please pay at the door.

 

Mitsou and Frog are Maine Coon kittens, so very posh fit teenage sex kittens (I’ll keep repeating it til I get to number one). Please make them feel welcome, unlike our poor resident cat does, who isn’t very happy after months of co-habitation, which is causing me more distress than her. I don’t want to have to wave bye bye to Mitsou and Frog, but would do anything for my 15 year old best friend on three legs or more. I’m trying to convince myself I’m not tempting fate by flaunting their luscious bodies so blatantly, and have for months felt something like the co-worker in the office who is pregnant, is dying to say, but doesn’t want to yet, in case. Please also vote for them if they happen to fly by on kittenwar.com, because unaccountably they’re not top of the charts. Admittedly I didn’t spend hours gluing their paws to windows and tv remotes in cute positions to win though. They’re mostly a blur.

I may be a sex kitten too (mrroww), but I can’t feign either fit or teenage really. Or, I can act the second, and frequently do (in the bad sense) but I can’t even really pretend the first, thus my silence here, along with several reasons:

1. It’s been a rollercoaster physically, and at times I’ve been quite ill.
2. Mentally: same rollercoaster.
3. The details of side-effects, drug variations, diet etc. would bore the pants off a stamp-collector.
4. No-one wants to read about poo except James Joyce fanatics, and I don’t know any.

For those who come here via Googling for parasite information, I should add at least a brief sketch though. If it were a comic strip, frame one would show me screwing up my face on day one and swallowing pills the size of those Cake pills from Brass Eye. Frame two: me prodding my pelvis and wondering why it hurts so much, and musing why my pee is brown, then reading the side-effects list and slapping my forehead. Frame three: me looking relatively pleased after a trip to the loo (I’m sure filters in the big internet pipes coming out of the Atlantic in New York will convert that to “restroom”). Frame four: a rather too obvious sign saying “3 weeks later” and under it, myself and partner in a mad panic ordering enough pills to make it 30 days. Last frame (hilarious punchline): me on day of end of treatment minus one looking very unhappy after another trip to the loo.

I hope that gives the jist without being too graphic (no puns tolerated), but I fear I’ve strayed into the graphic anyway: scroll back up and try to think about kittens again instead maybe if severely affected. Remember someone else with bad bugs might want to know all this (and they should leave a comment/mail me if they do).

So where am I now: 3 weeks after the incredibly expensive drugs ended, I’m not feeling that hopeful (oh, be honest. I’m very black.). I took two weeks of elite troop probiotics called VSL#3, after checking a millions times that they won’t feed parasites (most will because of stuff to feed the good bugs included), and hope that by now my gut is filled with exquisitely coiffured gut flora who are helping to run the rioting bad bugs out of town in their Rolls Royces. Too expensive for long, so now I’m only on some that cost £45/month. I’m sticking absolutely to the badbugs.org diet in case, which makes it very hard for my partner and me to actually find food I can eat.

My stomach/intestinal cramps jumped back into action just before the end of treatment, unsure why, but then departed again for now which is a relief, if temporary. But other signs aren’t favourable. I can get tested again in a week or two, but it won’t be a definitive test. If positive for Blasto, I face another raft of decisions I don’t have the endurance to make about more weird imported drug choices, and months more of this – meaning that the waning of symptoms might just be a temporary reduction in population. If negative, then I have to seek a fuller gut test, probably from America, to see why I’m still so ill. I have to learn more about leaky gut syndrome, gut dysbiosis, PEG tests, candida, ketoacidosis, marasmus. Read about how to sprout seeds, and culture healthy yoghurt. Learn about glutamine and the effects of liquorice (non-sweet variety) for stomach lining repair. I can’t do any of this. And then I have to decide if I dare eat anything with sugar or starchy carbs in it again, like say, an apple or a potato (vive la pomme). Frankly, terrified: brouhaha indescriptible is the only phrase I can remember from french textbooks at school that might sum up possible results.

As for me myself I: I’m stuck in bed, and to my horror when I went to weigh myself on a himalayan trip to the mythical land of upstairs, which I haven’t been to for two months, I fully expected to have regained at least a half stone (7 pounds, 3kg), and instead had lost somewhat more than that. After prompting from just about the most helpful and knowledgable new email friend to do the obvious, count calories, it’s apparent that we can see no way to eat more than 900 calories a day on the above diet if you don’t like nuts, and 2000 or so are what you need, so further shrinkage looks inevitable. Meanwhile, trying to do some meagre muscle exercises in bed (stretch a leg, stop – hardly hiking up the Everest) has resulted in ouch-ouch cramping pain in my foot for 5 days running, and my thighs look chickenish. If one more person says to me “you lost over 90 pounds, wish I could!” I shall scream. Please remember when I do, that the screamer will be someone whose previous mission was to eat as much cake as it was possible to within a single human life, and that cake, chocolate, cocktails (at which I was a genius) are things in my deep past, mourned and constantly brushed under the carpet. Surprisingly, I yearn for simple things like a bowl of cornflakes, some milk, a pear: I actually dream of toast.

Proof positive that the Atkins Diet, should you take it very seriously, works, and that it’s not a very healthy thing to do.

The only surviving photo of Boadicea

My mood (someone patronising in a white coat would call it my “emotional lability”) is currently very poor. This is the bit where I confess that none of the tone of this entry reflects how I actually feel, I took several days to write it, and I’m doing it by vividly pretending to be someone else in my head, Boadicea or someone – another reason I held back posting for so long. But someone on livejournal who is nice and kept poking me to post made me do so. I’ve been miraculously free of Wolf Dread since January (the first definable time I’ve been able to use this weblog as a diagnostic diary); but I can hear his frosty breath and padded paws in the undergrowth around me now, and I’m terrified he’s back, and when he’s back things get worse for a long time before they get better. Maybe I should go back and read that entry again, scratching in the dark for some secret spell to repel him nore quickly; or maybe there’s an inevitability about his return and the length of his sojourn. So I’ll make the same caveat I always do: that if you know me well, and haven’t received mail, or have and it’s markedly different in tone to this, that’s the real me – I’m no Boadicea and I’ve had no great harm done to me to avenge, just bad luck, and nothing like what others have had to endure. I do all the wrong things in an attempt to mock up a real social life around me: join forums full of new nice people then can’t keep up so have to hide, contact other bloggers and start reading their journals, then can’t keep up or think how to respond when I’m so down and understandably disappear from the radar, send cheery inconsequential mails to mailing lists of old friends I can’t see now as if nothing’s wrong, then can’t keep up the facade, or ache so badly that I can’t be where they are or understand the social references they’ve all developed since I disappeared from waking life: so I fall into silence. I’m just ill, tired, and wanting to stop fighting now and lie down – it’s been too long and I was never built to ride in chariots. Buses would be nice again, some time. I spend a lot of the time at the moment feeling like giving up – yes, with full knowledge of what I said in my last entry. I’m not sure what form this giving up would take.

It’s terrible to quote yourself, but in the interests of ecomomy, as I said to a friend two days ago:

I’ve noticed my whole view of life has changed in the last year –
I no longer expect any happiness, and am treating life as a balance
between pain and pointlessness and some relief and thinking more about
it as a very finite thing with an end not too far off, that will all
remain a mystery when I go. I wonder if that would last if I got well
suddenly, and the mundane normalcy that most people have, not thinking
about their bodies as they carry them through time and space, would
make these feelings go away. I suppose it’s a whole lot more eastern.

I wish I could do so much more. I wish I could spend more than 20 minutes with the kittens before begging my partner to take them away, because I’m too exhausted and tired with them chewing my toes, bless them. I wish I could go outside, because through the little porthole of my bedroom window I can tell the light’s turning autumnal, and I’ve mourned missing autumn, the only time to be alive, every year, but never dreamed I would miss it so substantially as this. I don’t care about spring and summer, but autumn is such a loss: the light somehow is gentler through the little slit of sun from the street at the top of my window, all the harsh arrogance of summer has been knocked out of it and its softer and more kind, and I want to be in it, and kick leaves in it, and smell it.

And I wish I could talk to whoever’s reading this about more than illness: I’d bored you to tears with the little I know about etymology, about the wonder of Creoles, about Tok Pisin, about how Lindley Murray in 1794 made us all believe that double negatives cancelled each other out, contrary to almost every other language out there and contrary to our Anglo-Saxon heritage (“Ic ne can noht singan“), and then I’d go on to bore you about how noht became “nowt” and how while the rest of the country was legitimately saying things like “I can’t sing nothing”, an elite group of Latinite fashionistas in London convinced us all it was uneducated. I’d tell you how, if everything falls apart, but I get some energy back, I’ll do a degree in linguistics one day, and become an idle scholar living out a life of quiet satisfaction hidden amongst minutae such as the timbre of a forgotten dialect or the origin of The Great Vowel Shift, happily losing myself in a dusty office forever.

I’d also dive back into the gender debates that I’ve had such well-thought out comments on here, and which I faithfully promised I would respond to, and still intend to. I’d insist how unfulfilled your life was until you’d heard Joanna Newsom sing “Erin”, or Roger Quigley, until you had to give in and concede defeat. I’d quote verbatim from Galaxy Craze’s “By The Shore” for hours, or Boswell’s London Journal, until you had to adore them. Like the drowned at sea in Dylan Thomas’s Under Milk Wood trying to recapture the sensations of life above the ocean bed, all I’d ask in return is something to remind me of the taste of cheesecake or the smell of leaves underfoot.

Fifth drowned:

And who brings coconuts and shawls and parrots to my Gwen now? How’s it above?

Second drowned:

Is there rum and laverbread?

Third drowned:

Bosoms and robins?

Fourth drowned:

Concertinas?

Fifth drowned:

Ebenezer’s bell?

First drowned:

Fighting and onions?

Second drowned:

And sparrows and daisies?

Third drowned:

Tiddlers in a jamjar?

Fourth drowned:

Buttermilk and whippets?

Fifth drowned:

Rock-a-bye baby?

First drowned:

Washing on the line?

Second drowned:

And old girls in the snug?

Third drowned:

How’s the tenors in Dowlais?

Fourth drowned:

Who milks the cows in Maesgwyn?

Fifth drowned:

When she smiles, is there dimples?

First drowned:

What’s the smell of parsley?

Captain Cat:

Oh, my dead dears!

So, my own war on personal terror finally started two days ago – and this one isn’t phony. I really do have evidence of Weapons of Mass Destruction inside me: a descent from the milder forms of ME/CFS for 12 years into (now) complete bed-boundness over 9 months; permanent unilateral inner ear hearing loss; gastric disorders I never dreamed could hit me so hard; seemingly complete loss of restful (delta? stage four?) sleep; and the loss of 6 stone in weight (84 pounds, 38 kg) since October. I imagine teams of little white-coated UN inspectors inside my gut ticking their clipboards, packing their bags and getting their hats: “Yep, OK. This time there’s evidence”. Not so much a smoking gun as repeated chemical attacks: enough to take some kind of action, surely?

My NHS doctor’s reaction over the phone? “Well, if you’re too ill to come in, what’s the point in me booking you an appointment with a GI specialist?”. It’s a very strange thing to be able to hear a shrug over the phone.

When you’re well, you don’t imagine, particularly in the UK, that if you got this ill doctors wouldn’t rally to find out what to do, try things, do a little more than a few standard tests and say “nope, you’re not going to die” and send you home. You imagine broken legs, and “Carry on Doctor”, or high temperatures and stethoscopes; or if you’re morbid you think of those cardiac arrest doodahs and beeping monitors. But nope: suddenly losing 6 stone in 9 months or permanent cochlear damage doesn’t seem to perturb doctors in the UK, if somewhere on your medical record the words “chronic fatigue” appear. It’s like having the Joker in card games: because it can stand for anything, it belongs nowhere; when symptoms are mild, it can be classed as “possibly psychosomatic” in hushed tones; when suddenly dramatic, their undefined class of illness “CFS” can be used to account for every symptom with a sympathetic shake of the head and “what can you do?” look.

I’ll try to leave the rest of that anger behind now, as the point of this entry wasn’t that: it was to try and use a possibly brief spurt of energy to say something about where I am physically. This is entirely selfish, as I’m so exhausted I’m finding email correspondence extremely hard work, and I can always point you here instead can’t I? I know it’s going to seem terribly rude when I do, but needs must.

Just before I dive in, I want to say something on behalf of me and all those with chronic disease: how unfair it is that we, unlike others, have to fill our weblogs with entries like this. They’re interminably boring to the well, and we know it. It’s unjust that we don’t have parties, and drunken yachting incidents to blog about. We don’t do it because we’re obsessed with our illnesses – we find them as boring as you when we get a little better. We do it because this is our lives when things are really tough, and we’ve found succour from others whose lives are flat-ironed by the same experiences. We do it because we’ve found information in similar articles that has helped us, we do it because we just want it said out loud. The rest of this entry will have little interest for the average reader, so I’ll draw a curtain around it for you to skip if you need to. But you’ll miss my terribly deep insight into the human psyche at the end if you do.

This is already feeling barely coherent, so please stick with me if you want to ask “how are you?” (kind people). Here’s an answer.

Continue reading War on Terror →

Fumblings will return, after some continued illness and imported antibiotics. Please don’t unbookmark me, and thank you for kind mails, which I will reply to.

I’ll have to let others say it for me just now; from a friend. Click on it.

My honest answer is: I don’t see why things matter, but thank you.

If it matters: after all that happened in the last 10 days,
I contracted another flu-like infection at the end of last week, followed by stomach infection which means bad stomach cramps and I can’t hold in food for any more than 3 hours – for 3 days and counting. This after taking more vitamin C (3.5g) to scare off infection on doctor’s advice, but I can’t believe that would do this to me for this long. This is just like the stomach infection I’ve had repeatedly for the last nine months, the first appearance of which coincided with my hearing loss. Doctors shrug; I sit terrified it will reoccur, amplify or migrate to the other ear. If I learned anything from computers, it’s that if you don’t find out why it crashed, it’ll happen again, and do more damage next time. If someone tells you your PC crashing is “idiopathic”, refuse to pay. I feel completely helpless: driftwood at sea waiting for the next splintering wave.

I’ve always had three things keeping me going: friends, music, and my imagination. Friends are only present via a keyboard and few and fewer and increasingly quieter as I get worse to be with; hearing is eating up my music; and my imagination’s suddenly and shockingly dried up, like a rusty tap you dare to turn off, which suddenly won’t turn on again.

I seem to dash from pitch blackness to illness and back again, til I don’t know what day it is: the sequence rushing by ever quicker, scenery streaming past faster and faster, like the dramatic chase at the end of a film. Some monstrous joke where my mind and body alternate lines rolls towards its punchline. The coming of a weekend always surprises me: Saturday feels like Wednesday. How can things go so fast?

Please bear in mind then that everything’s caving in just now. I can pretend cheery for so long then I will crash out, freak out, not answer emails, be suddenly tearful, angry or rude; or, if you’re a close friend be very scared to you, bore you, offend you or make you miserable which will make you want to go and talk to someone else. Which you should go and do. If you are a good friend, you should tell me that is what you’re doing.

I suddenly don’t care about being very candid in this weblog: what is it for anyway? Who’s reading and why? Is this a bad way to think? The next time I am terrible to you, please remember that I know less about what is going on inside me than you do, have some pity, and tell me what to do next. This could just have easily happened to you. I know I’m showing little of Saint Emily’s courage, and maybe you would do better than me. But if you think you would, show some while you’re well too, and either help me or be honest and tell me you’re off.

Love After Love

The time will come
when, with elation
you will greet yourself arriving
at your own door, in your own mirror
and each will smile at the other’s welcome,

and say, sit here. Eat.
You will love again the stranger who was your self.
Give wine. Give bread. Give back your heart
to itself, to the stranger who has loved you

all your life, whom you ignored
for another, who knows you by heart.
Take down the love letters from the bookshelf,

the photographs, the desperate notes,
peel your own image from the mirror.
Sit. Feast on your life.

Derek Walcott

My biggest fear is that when everyone has gone and the show’s over, there will be nothing of my life to feast on, and no stranger to love, just bones and sinew: a life in the lonely waiting room of gender, in the hushed and guilty bed of M.E. Who can fill up a lifetime’s larder of memories from a bedroom, and a mind that won’t issue me a permit for shoreleave? I even have to borrow others’ pictures and words.

OK, so. I’m spending my days with my laptop gently, or fiecely, warming my lap, in bed most of the time, wondering what happens next. I guess this doesn’t occur to treefrogs in the Amazonian rainforest, as something always does happen next: either they mate, swallow, or get swallowed, and it all happens very quickly. Hopefully they don’t anticipate all the time, worrying their little froggy nights away about the greater amazonian treefrog-eater, like humans do.

But what does happen next? I’ve had this crashing relapse since July, with some space inbetween where I hoped it was just the usual type of CFS/ME relapse I have, where I recover after a week or two, or at worse, a month or three, and suddenly the chequered flag for Easter flies by and it shocks me to the core. July to Easter, and well, let’s be honest: the best you can say is that I might not be worse. Some people with M.E. follow a gently ascending arc, like a coughing firework: from the shock of first illness, which on later reflection seems mild, returning to work (because we all work), and from thereon arcing downwards, fighting to stay in work to the exclusion of doing anything but lying down in the evenings and at weekends, and eventually splutter their fire out and fall to ground. Others burn their fierce illness brightly from the start, in hospitals, with a cluster of excited physicians all looking for an interesting organic agent, finding none and dispersing to more journal-friendly fodder: these bright catherine wheels of illness often seem to improve dramatically after a year or so, while the arcing rockets just keep getting worse. Oh to be a damp squib.

I always thought I was the third kind: the kind who just stay the same. We get ill, we read some of the terrible fight those with shattering disability have, we shake our heads at what we think of as their bravery at fighting the terrible politics of just trying to get well, later realising that a fly in a web isn’t brave for struggling, just desperate. And we drag ourselves through our well-paid jobs, smiling to colleagues reassuringly, and agonise when we are too ill to be there. We can’t do much when not at work, but this is the price we pay to stumble on: and between rare relapses, we get through well enough. I thought I’d stay that way.

But July to Easter is a long time. I’m suddenly feeling less like an inhabitant of the last paragraph, where I lived for 11 years, and more like the arcing dying firework. My dearest friend with M.E. assures me valiantly I will get better: she has been through this before: years-long relapses with no end in sight, which do end. And she keeps assuring me over and over, which helps everytime – I need telling, because my mind tells me otherwise. She also recognises so well this thing I call “relapses within relapses” – what seem like horrible dives in health, like an attack of heavy flu, within the major picture of 6-month decline, that I’m going through right now every week or so. But I keep contemplating what happens next if my body continues this arc. And the scary answer is presumably: nothing.

We’re all trained to think of every minute as sacred: every stupid film from Hollywood demands we make the most of every second of our lives and “potential”. We’re exhorted to “live every day as if it were you last” – either Marcus Aurelius or St Patrick, or some such irritating extrovert said that. As if I’m not doing that now, pondering that idea every hour, and as if the thought does anything but render me incapable of all action. There are people chronically ill all over the world, with lives stretching ahead of them, with literally nothing on the horizon – I don’t think I could have imagined this a year ago. If I lose work, along with what I’ve seemingly lost already, my ability to go anywhere: holidays, friends’ houses, cinemas or shops; and if along with that I lose my ability to listen to conversation, music or TV through hearing loss, and I don’t have the strength or concentration to often pick up a book: what is left? What happens next? The lack of hope for the usual landmarks of an everyday life that others possess, simply because they are impossible for me: meeting a new friend in town, having children, a concert, a holiday, a walk on a beach and a drunken sprawl of an evening with friends. How do they carry on, those with no future hopes or dreams, no consolation of a small future event or even the tiniest plans to meet someone for a coffee? The dread thought that this, what I have here now, is all there might be until I die. And the fear that you can’t talk about it, as it just understandably alienates others more, and I mustn’t, mustn’t keep going on about this to others.

Other than my partner, I don’t see anyone in the flesh but a single friend now, who keeps me going by bullying me into accepting her invitations to come round here and make me watch DVDs with her when I’m not too ill. It’s a shock to realise I hardly know anyone else here. I’ve suddenly found myself in a cold northern city with no scaffolding of people around me to prop me up now my masonry’s crumbling. Gender presentation fears made me scatter the pieces myself, or not collect the people who could be here now: fear of self-reflection and what others think of me – flesh being my curse as well as saviour, because I so need friends. I’m still doing the same even now. Reaction to my dreadful mail was full of kindness and sympathy mostly, but people have their own lives to shine brightly in. Most of the few miracles that resulted from that mail are fading, and I’m not going to chase them: there’s no sadder sight than someone desperately clinging to miraculous hope like a bereaved widow, while all around shake their heads at her decline of rationality.

So, what if I stay ill, as I have more or less constantly from July to April, for the rest of my life? I have to look through a glass darkly here, to not get the same shock next Easter, Christmas, next signpost to loss. Presumably:

I won’t see that many more people aside from the occasional doctor, nurse, postman;
I won’t make new meaningful, lasting friends, at least who I can actually meet;
I’ll lose my job in some painful, drawn-out process, and stay without work;
I’ll have to learn how to fight for benefits while deadly ill, like everyone else with this illness always had to;
I’ll struggle for motivation and strength to get up, lose my skills I had to work;
I’ll fight, or not fight, my own weakening ability to keep myself going mentally, emotionally, and can only presume the wolves of anxiety and depression will bite harder as they sense blood and guilt;
Nothing much more will happen: big life events will be something I won’t have.

A list like my last one: my fears. I must make another: what might happen:

My drastic drop in health will start, imperceptibly at first, to lift; one morning I’ll wake up and think: this is new;
With it, my anxiety will ease: a drug will work, or my mind will find a straw that holds fast, or the illness will lose grip of the foul chemical tricks it plays on my brain;
It’ll be in time to return to work, and my job won’t have been radically and terrifying changed by the powers that be;
I’ll regain my equilibrium in illness, balancing mind and body, and return to the game of work and rest;
I may be able to mix some play back in with my rest when not at work;
I’ll find some determination to make new, physical friends in this emotional dead fish of a city: selfishly, people who might still like me when I’m ill, and might want to watch TV with me even when I’m sick;
I’ll be where I was a year ago – again.

There’s another theoretical list floating around in the ether too: one which doesn’t involve a return to where I was. Books on M.E. currently preach this thought as a sin which will keep you ill: hope not for the past, build a new life – implicitly, with lower expectations. But joy in a raindrop or an opening flower never worked for me when my brain and body were being torn to shreds by illness and fear. I can’t just watch time passing by. Because I know, that when time’s passed, it doesn’t come round again: everything past is irretrievably lost. Books terrify me, films terrify me: people preaching that a minute wasted is lost forever. It’s like a slap in the face, everytime I hear such sentiments tripped out at the denouement of some film, scribbled by some spoilt script-writer who’s found themselves through what they think of as a tortuous life experience, and urges us all to live our lives to the fullest – if I could get out of bed, I might be able to try. We only live so many heartbeats; do I have to live most of mine out missing people around me, staring into a dark bedroom, living on a diet of no sugar, no dairy, no wheat, wincing at the sound of trash TV rattling a damaged cochlea, or agonising about a future meeting with an old friend or family member who may hate having to pretend they think of me in the gender I tell them I am?

My thought-savers for the day must be: that I still can get online, and that I know some people who still care, want, to talk to me there; that I am good at summoning up an appearance of zest and vitality online at least to stay within some small communities and not be seen as a case for charity (I hope); and that many people with the most appalling CFS/ME are, by their own reports, untouched by anxiety and depression, and by and large seem full of hope, even as their bodies drive them into the ground. So maybe if I can find a way to outrun the wolves, and a way to fight back decades of fear and shame about my true gender and be who I am with help from a few others, I can cope with the illness and loss? As to St Patrick and Hollywood Endings: maybe instead I should rather listen to Boethius, in prison for treason, after a life of renown, riches and happiness, whose Consolation is the impersonal nature of fortune, pictured as a great wheel:

Inconstancy is my very essence; it is the game I never cease to play as I turn my wheel in its ever changing circle, filled with joy as I bring the top to the bottom and the bottom to the top. Yes, rise up on my wheel if you like, but don’t count it an injury when by the same token you begin to fall, as the rules of the game will require.

Or maybe I should return to Taoism for another look:

Do you have the patience to wait
till your mud settles and the water is clear?
Can you remain unmoving
till the right action arises by itself?

This entry is one of shameful self-pity: one which may add to the guilt and fear, and drive those who are still near enough to hear me a bit further away. I promise you it’s been hotly debated internally whether I should post this, or anything as honest and raw again, because of this danger: this weblog’s at high risk of survival right now. My next entry will (will) be academic and dry, or light and breezy. But if I have only so many heartbeats, how else can I spend them, and still be true to the beating of my heart, without telling?

Why am I so ill now?

Because I am suffering from a somatic disorder where I perpetuate my own beliefs about illness
Because I took 10 years’ of antibiotics when I was young
Because I am depressed
Because I have anxiety disorder
Because I internalised my parents fighting, manufacturing illness
Because I have an poorly-understood organic disease called CFS/M.E.
Because I am on too many drugs for anxiety and sleeplessness
Because God is punishing me
Because I am having codeine withdrawal
Because the universe likes to experiment on people
Because the medical diet I am on is making me iller
Because I am perpetuating my own anxiety as illness myth
Because I am suffering from chronic lack of stage four sleep
Because I have subconscious reasons to gain from remaining ill
Because I was bitten by a tick and have unrecognised Lyme disease
Because I grew up transgendered, and my unhappiness results in physical symptoms
Because I am self-pitying
Because I have an undetected illness such as MS
Because I am chronically lonely through lack of social interaction
Because my anxiety about my hearing loss has driven me to self-isolation
Because I am a weak person
Because I have hidden mercury poisoning
Because some people are not built to survive, and current society prolongs their existence artificially
Because I have a brain tumour
Because I lack courage
Because I am a bad person, and am being paid back for it
Because I have chronic candida which is affecting my whole immune system
Because I have no courage to lift myself out of this state
Because I have hidden severe allergies
Because my unhappy childhood set my brain and body on a course of self-hurt
Because I have an as-yet misunderstood immune system dysfunction
Because I am a scientific experiment in a simulated world
Because some things are supposed to be
Because I won’t get out of bed, rather than can’t
Because my mother passed on a polio-type illness she contracted to me via the womb
Because there are no reasons, and the universe is unkind and unknowing
Because I sleep outside my natural circadian rhythm of daylight and nighttime
Because I deserve it
Because I ask questions like this, while so many are so much iller, more unhappy, more anxious

Short post. I’ve been unable to frame an entry here ever since it came home to me how impersonal this weblog’s become. I don’t talk about how ill I continue to be, or how very anxious I am so much of the time, or terribly unhappy with regards to my gender presentation, and it’s dishonest (to myself, I guess?). Instead I’ve been coming across as some confident gender warrior with a scheme when I am schemeless, or political campaigner in a mask, when really I’m clueless what I can do to arrest the decline of real science in the medicine of M.E. in the UK. I’ll try and reframe myself and this weblog when I can see through the current fog of anxiety and self-disbelief and unhappiness, and I get a bit weller again. What must be hardest for those who know me must be the constant ringing of changes. Online, you can often present as cheerful for as long as you can type, and you can avoid dwelling on your disastrous mood or fears if you can type quickly: and when the physical or anxiety crash comes you can scoot off. But things really are very much as they were when I typed out the email that really started this.

In the meantime I’ll have to make do with others’ words as clothes which fit well enough. I was never so much of a Billy Whizz – never the racing do-it-all – but I think with hindsight my mind’s been furiously and secretly playing several tracks internally at the same time since I was very young: learning to present the wrong gender to fit in even from before you learn what “gender” means. Same Whizz, different source. Minnie the Minx pretending to be a Billy Whizz. Or a family of Billy Whizz, Soppy Susan and Fatty Fudge (a not entirely fair way of finding out if my brothers are reading this).

So the following article expresses my current situation well: self-doubt, and the difficulty for those around you to understand the changeability and nature of this illness – thank you Jane. I’ll reprint it below under “Continue Reading”, but for those who want to read related comments, which stray back into the dreadful and worsening UK politics of “treatment” just now, the original article is here: Is it M.E. or is it me?

Continue reading Billy Whizz →