Re: Embarrasing for ME and You -

[Guest guest]

In infections , " Hodologica "

> <usenethod@y...> wrote:

" MS and many other such diseases just really *are* recognized by

people, whereas idiopathic fatigue/malaise absent clear objective

clinical signs, be it ever so severe, has consistently been

attributed to excessive masturbation, cessation of masturbation (in

the 1930s...but likely later on too), poor charecter, " repression " ,

whatever. "

This is the weak part of your reply, .

" MS and many other such diseases "

....is already a non-sequitor. MS is something distinctly relevant or

not. If not, why mention it at all?

" just really *are* recognized by people "

....really? It's strange to hear you say so. I know, because you

yourself have reminded me over and over, with a level of frustration

that approaches rage, that MS is treated as an autoimmune disease,

that the treatments are rarely if ever any help and often make

things worse, that pleas for further medical steps are greeted

with " there is nothing more that can be done. "

This is the standard we aspire to? I don't think so. So why make the

contrast in the first place?

Yes, you can make the argument, that ME/CFS (assuming that this is a

real entity, rather than a failed diagnostic category) has been

singled out for unfair treatment. But are we then going to appeal to

the same authority that dispenses this injustice to press our claim

for better treatment? Does that actually make sense?

I would say that people with the diagnosis of ME or CFS have every

reason to express solidarity with people who have MS, and no reason -

absolutely nothing to gain - by risking offending them with a

casually thoughtless reference to their suffering.

I'm a gay man who grew up in a hick town. I know about unfair

treatment. I also know how annoying it is when people say to me " you

people are always demanding special rights. "

I could respond to that by saying " nope, I don't want any special

rights, I just want to be afforded the same dignity that society has

granted to, say, African Americans. "

My case does not get any stronger. I have just implied that African

Americans have been afforded a decent level of respect, to which any

person might aspire. In other words, I have just made a complete

fool of myself, and in the process injured someone who might

otherwise have looked more kindly on my plight.

How about " nope, I don't want any special rights, and neither do any

of these other people you see lined up with me on the margins of

society. "

That's better, but it still risks offending people who don't know

diddly about being gay, or begin to understand how punishing

homophobic laws and attitudes can be. I'm asserting a commonality I

have yet to establish.

It's better, both politically more savvy and also more authentic, if

I say " one of things that should never happen to you is having your

life ruined because of something about you that does no harm to

anyone and is present from birth, beyond your control. " I can then

explain how that rule applies in my case, having stated it in a form

that others can recognize.

The distinctions that modern medicine makes are supposed to be more

emperical, less value-laden, than the distinctions societies make

between 'more worthy' and 'less worthy' people. We can certainly

point that out. The fact is, though, if I or someone I love have MS,

and someone with a dubious-sounding disease says " I have as much

right to to scarce medical resources as any MS patient, " I am going

to be offended.

We don't get anywhere by way of such assertions. They cost us

something and gain us nothing. They put us, rhetorically, over-

budget.

The rest of your post, which simply highlights the scandalous abuse

of humanity that ME/CFS patients have suffered, is so much more

powerful! Not just for what it says, but because it doesn't distract

the reader with erroneous comparisons.

So no, I don't think my comments are inappropriate. I think the

minute you try to defend what the guy said about MS, you sound like

a dummy, but when you say what you hope he meant about ME/CFS, you

sound like your smart, sensitive self.

His comment re: MS should not have been made, and I think the

reasons it should not have been made really matter.

>

> I agree with Jill, - your thoughts are a good read in their

own

> right but I dont see them applying really to this letter/situation.

>

> MS and many other such diseases just really *are* recognized by

> people, whereas idiopathic fatigue/malaise absent clear objective

> clinical signs, be it ever so severe, has consistently been

attributed

> to excessive masturbation, cessation of masturbation (in the

1930s...

> but likely later on too), poor charecter, " repression " , whatever.

Ive

> read the most terrible accounts, which I presume are probably

true, of

> a little australian girl being institutionalized and forced to

> exercise, having her complaints ignored and rejected as a treatment

> technique - this in our own time. ME is still mistreated

horrednously

> in europe especially on a very broad basis - and in the US CFS is

> scoffed at on TV comedies, which really ends up detrimenting

people in

> concrete ways, such as thier access to medicine. So I think the

> comparison to MS does have to be made publically for pragmatic

reasons.

[Guest guest]

You have all made good points about this letter to a UK national

newspaper.

I agree with most of what you are saying but you have to bear in

mind the situation in the UK as it stands now.

In the UK when our doctors look up official info on ME/CFS (CFIDS),

when patients are being assessed for sickness and disability payments

(state or insurance), or attending the growing number of CFS centres,

they are not considered as being ill at all. Instead they are

suffering from a functional somatic disorder which they can be

persuaded out of by a form of CBT which is very different from that

offered to other chronically sick and disabled patients. The other

treatment they are being offered is a graded aerobic exercise

referred to as GET, this is the treatment that has done so much harm

already but warnings over the risks are being conveniently ignored.

GET is being pushed in the belief PWME/CFS are only suffering their

symptoms through deconditioning brought about by a fear of

activity/exercise.

The psychologisers, who have been behind this since the late 80s, and

allowed to gain increasing influence over national policy, refer to

PWME/CFS as malingerers, scroungers, the undeserving ill, or they are

just weak minded and cannot cope with the challenges of everyday

life. They use the Oxford Criteria so headaches, fatigue and perhaps

muscle aches and pains is all that's needed for a Dx; these symptoms,

which are put down to exaggerated body awareness or all in the mind,

can be fixed by " rehabilitating " the patient. Rehabilitation = CBT

and GET.

The quote used in this letter is from a US specialist in CFIDS, and

has been repeated by others. So whilst it might be seen as

inapproppiate to compare the life affecting consequences of ME/CFS

with MS, here in the UK it has much more relevance. PWMS are treated

very differently by health professionals, here most PWME/CFS are

treated in an appalling manner and have little or no hope of getting

any investigations done, even for non ME/CFS health issues. The

consequence means PWME/CFS often have no access to funded treatments

which might improve their quality of life, or even save their life,

because it is not just the ME/CFS that is ignored; everything is.

Cheers, Tansy

> >

> > I agree with Jill, - your thoughts are a good read in their

> own

> > right but I dont see them applying really to this

letter/situation.

> >

> > MS and many other such diseases just really *are* recognized by

> > people, whereas idiopathic fatigue/malaise absent clear objective

> > clinical signs, be it ever so severe, has consistently been

> attributed

> > to excessive masturbation, cessation of masturbation (in the

> 1930s...

> > but likely later on too), poor charecter, " repression " , whatever.

> Ive

> > read the most terrible accounts, which I presume are probably

> true, of

> > a little australian girl being institutionalized and forced to

> > exercise, having her complaints ignored and rejected as a

treatment

> > technique - this in our own time. ME is still mistreated

> horrednously

> > in europe especially on a very broad basis - and in the US CFS is

> > scoffed at on TV comedies, which really ends up detrimenting

> people in

> > concrete ways, such as thier access to medicine. So I think the

> > comparison to MS does have to be made publically for pragmatic

> reasons.

[Guest guest]

- I almost did throw in a parenthesis of indignation against

sciences failure to properly address more-or-less-simple occult

infection as a possible etiology for MS. However, I am always

mystified and confounded in reading about all these diseases, and dont

have command of MS literature, and I have been pacified lately by

seeing the autoimmune etiology refered to properly as a theory, and

evaluated openly, in multiple MS papers I've read. Thats not to say I

feel any particular hope, on a personal level, that the model disease

experimental autoimmune encephalitis is ever going to directly shed

usable light.

Healthy people out there are (largely) bustling with freedoms and joys

we can often hardly remember, and those who arent researchers or

advocates concered with one or another form of suffering spend no time

contemplating the lots of the ill in objective detail (I certainly

wouldnt have it any other way, as their lives are for other purposes

from necessary to sublime). The crushing gravity of our particular

diseases, which isnt well-grasped, therefore has to be addressed in

public discourse in succinct and immediate terms, and comparison to

well-known diseases serves that end very well, perhaps uniquely well.

Most people dont conceptualize CFIDS as being " in the league " of

tertiary syphilis or MS, diseases which are understood by everyone as

being utterly tragic when severe. Yet our diseases are in that league.

Roughly quantifying " quality of life " , ie suffering, is a routine part

of what the medical and, ultimately, broader social establishments

necessarily do in their discourses and duties. Its part of descriptive

science, and of cultural understandings. In personal, existential, and

spiritual spheres, even the blessed face suffering, and the majority

of even them undergo painful uncertainty over mortality, loss, and

ultimate meaning, all of which is finally incommunicable and

incomparable even amidst the priceless wisdom of myriad poems and

churches - but the public sociopolitical sphere needs to reckon with

things roughly and concretely insofar as they can be reckoned with,

and must do it crudely if and where it can only be done crudely. The

average PWC needs quite a bit more from society than just a prozac

prescription (and doesnt need psychotherapy) and that needs to be

recognized culturally.

[Guest guest]

Great post Tansy, lots of research packed in there.thanks for sharing...What a pity... Joe public knows the instant a celeb gets a fat arse ,yet has no inkling of the biggest threat to health since the black death ...whatever happened to the watchdog press?

-----Original Message-----From: infections [mailto:infections ]On Behalf Of tansyapSent: 19 April 2005 19:08infections Subject: [infections] Re: Embarrasing for ME and You -

You have all made good points about this letter to a UK national newspaper. I agree with most of what you are saying but you have to bear in mind the situation in the UK as it stands now. In the UK when our doctors look up official info on ME/CFS (CFIDS), when patients are being assessed for sickness and disability payments (state or insurance), or attending the growing number of CFS centres, they are not considered as being ill at all. Instead they are suffering from a functional somatic disorder which they can be persuaded out of by a form of CBT which is very different from that offered to other chronically sick and disabled patients. The other treatment they are being offered is a graded aerobic exercise referred to as GET, this is the treatment that has done so much harm already but warnings over the risks are being conveniently ignored. GET is being pushed in the belief PWME/CFS are only suffering their symptoms through deconditioning brought about by a fear of activity/exercise. The psychologisers, who have been behind this since the late 80s, and allowed to gain increasing influence over national policy, refer to PWME/CFS as malingerers, scroungers, the undeserving ill, or they are just weak minded and cannot cope with the challenges of everyday life. They use the Oxford Criteria so headaches, fatigue and perhaps muscle aches and pains is all that's needed for a Dx; these symptoms, which are put down to exaggerated body awareness or all in the mind, can be fixed by "rehabilitating" the patient. Rehabilitation = CBT and GET.The quote used in this letter is from a US specialist in CFIDS, and has been repeated by others. So whilst it might be seen as inapproppiate to compare the life affecting consequences of ME/CFS with MS, here in the UK it has much more relevance. PWMS are treated very differently by health professionals, here most PWME/CFS are treated in an appalling manner and have little or no hope of getting any investigations done, even for non ME/CFS health issues. The consequence means PWME/CFS often have no access to funded treatments which might improve their quality of life, or even save their life, because it is not just the ME/CFS that is ignored; everything is.Cheers, Tansy> > > > I agree with Jill, - your thoughts are a good read in their > own> > right but I dont see them applying really to this letter/situation.> > > > MS and many other such diseases just really *are* recognized by> > people, whereas idiopathic fatigue/malaise absent clear objective> > clinical signs, be it ever so severe, has consistently been > attributed> > to excessive masturbation, cessation of masturbation (in the > 1930s...> > but likely later on too), poor charecter, "repression", whatever. > Ive> > read the most terrible accounts, which I presume are probably > true, of> > a little australian girl being institutionalized and forced to> > exercise, having her complaints ignored and rejected as a treatment> > technique - this in our own time. ME is still mistreated > horrednously> > in europe especially on a very broad basis - and in the US CFS is> > scoffed at on TV comedies, which really ends up detrimenting > people in> > concrete ways, such as thier access to medicine. So I think the> > comparison to MS does have to be made publically for pragmatic > reasons.