PERMISSION TO FORWARD, REPOST & USE IN NEWSLETTERS.
Please urge your listowner to post everything even - perhaps especially
- things they personally do not agree with for fair balance.
If any of my postings is being censored, or selectively edited out, by a
listowner, you may wish to join my M.E. Chums list to get the whole unbiased
picture.
------------------------------
Reply to a regular feature called P.S., at the back of a quarterly magazine,
called "The Spark", published in Bristol and available in libraries, in
which a local person talks about their life in a Question & Answer format.
Here, Alexandra Barton, Life Coach, tells of her own illness and promotes
her book, "Recovery from CFS - 50 Personal Stories".
It is not online but there is a link below my signature to the whole story,
we have scanned on to our website.
If anyone wishes to respond, there is an e-mail address, mail@thespark.co.uk
Cheers
John
drjohngreensmith@mefreeforall.org
The Spark Letters.
There is no doubt that improving your diet and being determined to recover
from any illness is positive advice (*PS Alexandra Barton, The Spark, Issue
53, May-Aug 2008*) but for people who have M.E. (*Myalgic Encephalomyelitis*)
it is most often not sufficient to bring about a cure.
Paradoxically, her advice may be very disappointing for M.E sufferers
because, when having tried everything that Alexandra suggests - and from
which she got better - but it hasn't worked for them, they are left to
conclude, either that they haven't followed it properly, or that they really
are incurable, which may not, in reality, be the case because, first, they
may not have the same illness that Alexandra (and the other cases in her
book "Recovery from CFS - 50 Personal Stories") had and secondly, they may
not be incurable if biomedical research shows us the cause of M.E. and leads
us to a cure. Sadly, this proper scientific route is not being properly
publicly funded.
We need to be much more precise about diagnostic terminology. Although they
are commonly taken to be equivalent, M.E. is neither synonymous with Chronic
Fatigue Syndrome (CFS), nor is it an illness to be bundled with others under
this catch-all umbrella term, which is so indiscriminate a label that there
is not an illness to which it might not be applied. Whatever is the cause of
the ubiquitous and omnipresent overwhelming lassitude from which people with
M.E. suffer, it is not fatigue as we normally understand it. It does not
come on, as tiredness usually does, after physical or mental exertion and it
does not dissipate with any amount of sleep. In addition, M.E. sufferers
have a range of symptoms (including muscle pain, swollen glands, cognitive
dysfunction, slow recovery after minuscule effort and dizziness), which
'fatigue' alone does not cover. M.E. sufferers do not have chronic fatigue.
People with illnesses, in which chronic fatigue may be a consequential
symptom and from which they may recover in time, do not have M.E. They are
not the same and should not be treated as such.
Most people with M.E. are not depressed. Sure, they are, quite understandably, fed up with being unable to work, or go to school, with the decline in their standard of living on benefits, social isolation and fractured relationships, on top of the physically disabling symptoms of M.E. but this is not the same as clinical depression, which may occur for no such
obvious reasons and these states, too, should not be treated in the same
way. There is no evidence of any lasting benefit, without relapse, for
people with M.E. from one of the recommended treatments, Cognitive Behaviour
Therapy (CBT) and the other Graded Exercise Treatment (GET) actually makes
more M.E. sufferers worse after it, some irrecoverably so. You can't talk
your way out of M.E.
Yes, M.E, sufferers should expect some benefit from improving their diet and
adopting a positive attitude but they should not expect a cure, or be led to
believe that other M.E. sufferers have been cured these ways.
Yours sincerely
drjohngreensmith@mefreeforall.org
Dr John H Greensmith
ME Free For All. org
P.S. Alexandra Barton (The Spark, Issue 53, May-Aug 2008)
Full story scanned here:
http://www.mefreeforall.org/M-E-in-the-News.107.0.html?&no_cache=1
On Mon, Jun 16, 2008 at 7:19 AM, Lesley wrote:
Just want to say that I agree with this very strongly.
Positive thinking is good, of course, but it is NOT A CURE FOR ME.
There are various approaches involving modifying beliefs, cultivating
positive mental attitude, working on emotions and harnessing the power
of thought, and NONE OF THEM CURE ME.
If a person is suffering from emotional distress, then an emotional
approach may help. However, it should NEVER be promoted as a
treatment for ME.
When such approaches claim to treat or cure ME, they can be harmful. They may encourage a person to push beyond his/her physical limits, which is damaging. When these approaches fail to cure ME, the sufferer may be blamed for having a negative attitude, not wanting to get well etc - such a cruel example of blaming the victim.
Lesley
Thank you very much for such a positive response Lesley,
May I suggest that if you have the energy (and wish to do it) that you send
this crucial point to the letters page at The Spark mail@thespark.co.uk No
editing is required, here. It is a great point to make.
What I always say, on all the groups to which I belong, is that it costs no
more energy to send your e-mail to the original source (in this case, The
Spark); if you don't the readers, there, won't know you made it, or even
that you and others think it; often you are simply preaching to the
converted, that is, M.E. sufferers will either wholly agree with you, wholly
disagree, or have some shades of grey and we don't move a step forward - but
no one out there is going to know, if we don't get it back to them, or the
strength of feeling (Why do you think they've got away with "Yuppie flu" for
so long?).
The other essential point is that, even if your letter, doesn't get chosen,
it increases the pile on the Letters Editor's desk, making it more likely
that at least one will get in. They especially like it if there is a
difference of opinion and you may get not only two letters but a follow-up
discussion.
Finally, whether they publish your letter or not, we always want it on our
site, in LETTERS, here, so your work is never wasted and you will see it up
somewhere. However, as always, it has to be your choice.
Best wishes
John
* * *
In the early days of CFS, there were a series of elimination diets circulating, which would serve to determine if you had a food allergy -- celiac disease can mimic CFS and there are many people who were erroneously told they had CFS who were miraculously cured by a gluten-free diet.
To my husband's consternation (because I was too sick to cook separately for him) I diligently tried all of the diets, and made three determinations: (1) the only things I'm allergic to are the things I already knew I was allergic to, (2) a vegetarian diet makes me worse because I need far more protein than the average person to function, (3) I am hypoglycemic in the morning and need a "sugar rush" with breakfast ... a Continental breakfast with a pastry really is better for me than the traditional American breakfast of bacon and eggs. (And, if you limit yourself to one pastry, is lower calorie, too. One serving from the package I have here this week has just slightly more calories than one egg and one slice of dry toast; most adults eat at least two eggs and put either butter or jam on their toast.)
When we stayed with relatives for a few weeks, she fed us The Candida Diet, which she's on. Again, candida can mimic CFS, and following the candida diet can weed out those who were misdiagnosed, but it didn't make me feel any better because I don't have candida.
I do just fine on a steady diet of baked chicken alternating with broiled steak, baked potato, and vegetables/salad -- fresh food, home cooked, minimal preservatives (there are some in canned veggies when I'm too sick to go out for fresh ones and have to raid my pantry). But there's a big difference between "do fine" and "cured"; no diet I've tried has given me the miraculous bounce to feel normal -- I settled on the combination that prevents me from feeling worse (e.g., having even less energy than usual because I'm eating vegetarian and avoiding sugar).
With frequent bouts of vomiting/diarrhea, I keep a supply of Gatorade and Pedialyte in the house, which some people would consider health no-nos because they have both sodium and sugar, but those are the things you need to replace. And -- oh horrors! -- during one extended bout, as I was sipping my very last bottle of Pedialyte and didn't feel up to going out for more, I thought the nutrition numbers on the label sounded familiar, and discovered that I was right ... other than the potassium, those numbers were quite similar to the numbers for Coke. I always have Coke on hand to settle a queasy stomach (old home remedy), and I'd really much rather drink Coke and take a potassium tablet than choke down syrupy Pedialyte. Plus it's a lot cheaper than Pedialyte. (Dad's nurse gave them a recipe for mixing sugar and salt into orange juice when they run out of Pedialyte, but I don't usually have OJ in the house, and the nearest store that sells OJ also sells Pedialyte and Gatorade, which don't upset my stomach the way OJ does.)
As Lesley's letter points out, when treatment for a condition the patient doesn't even have fails to create a miraculous cure, the patient is blamed. In fact, it is the doctor who is at fault, for misdiagnosing the patient. In my case, I went to a new doctor with a specialist diagnosis already, confirmed by another specialist a few months before that appointment, and he decided he knew more than the specialists and changed their CFS diagnosis to something he could fix, then verbally abused me when the wrong treatment made me worse. He didn't need to make a diagnosis, it was presented to him as a fait accompli, from two specialists; this was not a potentially-forgiveable accidental misdiagnosis, it was an intentional act of defiance.
It took me years to finally get someone to give me the pills I'd asked for at my first appointment, and when I got the right treatment, I improved. Yet, that doctor still refuses to admit that he misdiagnosed me when he changed my existing diagnosis, and puts all the blame on me -- my recitation of symptoms "made no sense". It made no sense because I was accurately and expertly describing CFS, and not saying what he wanted to hear to support his misdiagnosis (because I know exactly what I need to say to make it clear that I don't have depression).
It's often the doctor's attitude -- not the patient's -- that needs changing.
If you don't improve, don't let the doctors lay guilt on you; put the blame where it belongs: on the doctor who isn't prescribing the right things. My first specialist was right, if you improve the quality of sleep, the immune system is better able to do its job, and you'll start to feel better. That's an immune dysfunction, not a psychological problem.
Changing the diagnosis is not going to change the patient's actual condition; it may, however, result in permanent disability if the patient doesn't get the correct treatment in the crucial time frame. How cruel to make a patient suffer just to protect the doctor's ego! Certainly not in keeping with "first, do no harm".
No comments:
Post a Comment