Letter here http://www.mefreeforall.org/2008-Apr-Jun.448.0.html#c3698
in response to a "Celeb" M.E. sufferer, Suzi Walker, in which resident Dr
Hilary Jones says that M.E. "usually disappears within a few years on its
own"
(link http://www.mefreeforall.org/M-E-in-the-News.107.0.html to the
"Fabulous" Mag supplement of The News of the World, 29 June 2008 below my
signature)
(Someone might like to make the point that Suzi has been ill for 9 years).
I'm sure there are plenty of you out there who are living proof to the
contrary.
If you would like to tell Dr Hilary Jones so, the News of the World letters
e-mail address is your.letters@notw.co.uk
Only short letters stand a chance.
Cheers
John
drjohngreensmith@mefreeforall.org
*Your Letters - News of the World*.
As far as I know, there are no statistics exclusively for people with M.E. (*Myalgic Encephalomyelitis*), which have not been distorted by adding in other patients, with a variety of illnesses, in which chronic fatigue is said to be a symptom and calling them all ME/CFS. It may be this proportion of CFS patients who "usually improve with time" (*'I was so exhausted I couldn't move' , Suzi Walker, On the couch with Dr Hilary, Fabulous Mag, News of the World, 29 June 2008*), leaving the erroneous impression that M.E. "usually disappears within a few years on its own."
We won't know for sure until a thorough epidemiological study has been done
but, already, we can count hundreds of thousands of heads, who have remained
ill for decades, which proves Dr Hilary Jones's assertion very unlikely
indeed.
Yours sincerely
drjohngreensmith@mefreeforall.org
Dr John H Greensmith
ME Free For All. org
http://www.fabulousmag.co.uk/health/index.php
'I was so exhausted I couldn't move' (On the couch with Dr Hilary Jones:
Suzi Walker, Fabulous Mag, News of the World, 29 June 2008)
Every week a celeb asks our fabulous doctor for a diagnosis. This week it's
TV presenter Suzi Walker, 36
Some days I wake up feeling exhausted.
My head feels cloudy, my joints hurt and the smallest decision has me in
tears.
I feel so weak I can't even climb the stairs.
I have Myalgic Encephalopathy (ME), or Chronic Fatigue Syndrome.
For years I didn't know what was wrong with me, and at one point I felt so
awful, I thought it was cancer.
My symptoms began nine years ago, after my daughter Sophie was born.
I contracted post natal pre-eclampsia, and within hours of her birth, I had
a fit and went into a coma.
When I woke two days later I felt weak, and I continued to feel lethargic
and achy.
Four years later my GP finally diagnosed ME but said there was no cure,
which was devastating.
Over the years I've spent thousands of pounds looking for my own 'cure', from vitamin injections to faith healers, but nothing has worked.
Stress is a trigger so I try not to get too anxious.
I also try to eat well, but it can be hard if I'm feeling dreadful.
I once got so thin that I was hospitalised and had to be tube fed.
Overdoing it at the gym can cause a bad attack of fatigue.
Is there anything I can do to keep symptoms at bay?
Suzi is raising awareness for the charities Action for ME (Afme.org.uk) and
ME Research UK (Meresearch.org.uk).
DR HILARY'S DIAGNOSIS
In its mildest form, ME causes physical weakness, extreme tiredness,
emotional and psychological distress, sleep disturbance and depression.
At its worst, it is totally disabling, making people bed-bound and dependent
on others.
Although there is no 'cure', it usually improves with time and there are
things you can do that can help.
First, graded exercises with realistic goals and plenty of rest in-between
builds stamina.
Then cut out caffeine and alcohol and take extra magnesium and omega-3 fatty
acid supplements.
An anti-inflammatory tablet like ibuprofen can ease joint and muscle pains
and headaches, while talking therapy and antidepressants can lift mood.
The good news is that ME usually disappears within a few years on its own.
But in the meantime, joining a local support group and learning how to
handle stress effectively can make a world of difference.
(c) 2008 News Group Newspapers Ltd.
* * *
There are ways to improve post-viral CFS (which is not the same as psychiatric fatigue), but those ways do NOT include exercise. Suzi is right, a trip to the gym will make you feel worse ... if you have CFS rather than depression -- depressives feel energized after exercising. Dr. Hilary is wrong in saying that graded exercise is helpful. Obviously, we don't recommend that anyone lie in bed doing nothing if they are capable of doing a few things for themselves, but Dr. Cheney has always been quite clear that aerobic exercise is dangerous for CFS patients -- do some stretches/yoga/resistance exercises to prevent your muscles turning to jelly, but nothing strenuous. I can "mosey", but I can't walk at a normal speed. If I allow 30 minutes to walk the 6 blocks to the grocery, I return home tired and needing to sit down, but if I try to walk the 6 blocks in 10 minutes, I return home exhausted and needing to go to bed the rest of the day.
There are many ways to differentiate depression and CFS -- Dr. Bell's book lists some of them, Dr. Berne's book has a two-page chart -- but the easiest is to gauge the patient's physical reaction to aerobic exercise. A hallmark symptom of CFS is exercise intolerance, also called post-exertional malaise. Unlike all those blood tests that will come up normal, this test costs nothing, and will give you a foolproof answer.
Some patients with CFS develop depression as a reaction to having their former lifestyle ripped away from them, just as some cancer patients and MS patients and amputees develop depression as a result of the lifestyle changes imposed on them. Anti-depressants and counseling can help the depression, but they won't cure the CFS any more than they will cure cancer, MS or grow a new limb for an amputee. Again, if the patient has tried several anti-depressants and still isn't feeling better, that's a pretty good sign that the problem isn't depression, it's CFS.
Talking to a friend who is a retired psychiatric nurse makes me feel better (in the sense of feeling less isolated, spending 99% of my time at home, and most of that in bed or on the couch), but it does not miraculously make me feel well enough to go back to work. In fact, having to concentrate on a phone conversation exhausts me enough to require a nap after I'm done talking to her. She (like several other psych professionals I communicate with on a regular basis) has never told me "I think you need counseling, you sound depressed". It's only the amateurs who try to tag the depression label on anyone who says they're tired and spend most of the day in bed. The professionals know there's more to it than that -- someone who's depressed doesn't WANT to do anything, whereas someone with CFS wants to do it very much, but finds their body doesn't cooperate.
My first specialist told me the key is to improve the quality of sleep. And, sure enough, after years of being handed one anti-depressant after another that didn't do a thing, when I finally got sleeping pills that put me to sleep 8 hours a night (instead of 2 hours), I startd to improve. My immune system restarted and was able to start attacking the virus again. I ran a 101 fever for 6 months (duration documented by the doctor's office), which is additional evidence that I have post-viral CFS, not a psychological problem.
Ibuprofen is an anti-inflammatory. If you have inflammatory pain (e.g., arthritis), it will help. But if you have the neurological pain from CFS/fibro, you can take Advil by the handful, and all it'll do is give you an ulcer ... it won't relieve your pain. If you can get your doctor to prescribe something narcotic (I'm taking Tramadol), terrific. If not, heat is your friend: hot bath, hot weather, heating pad. Also, try FibroSoak/FibroRub from www.MtShastaNaturals.com
This response by Dr. Hilary shows the immense level of ignorance that CFS patients have to deal with -- doctors who blissfully prescribe precisely the things that make CFS worse, because they can't tell the difference between the symptom of chronic fatigue, psychiatric Fatigue Syndrome, and post-infectious Chronic Fatigue Syndrome (known in other English-speaking countries as Myalgic Encephalomyelitis).
Too many of us go to doctors expecting to be cured, and instead wind up getting steadily worse while they play Blame The Patient. Instead, the blame needs to be laid where it belongs: at the feet of doctors who think they know more than they do.
In the legal profession, we're trained to say "I don't know, but I can find out". There's no shame in looking things up -- to the contrary, we can charge $100/hour for making sure that we're giving you the right answer. Doctors, on the other hand, hate to say "I don't know". They'd rather doom a patient to a lifetime of disability than admit there's something they need to look up. I'm far more impressed by a doctor who does what it takes to make sure that I get the RIGHT diagnosis and the RIGHT treatment than one who goes for the easy answer, and then blames me when the wrong treatment, for the wrong disease, doesn't cure me.
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