Thursday, September 17, 2009

Abuse of CFS patients

*please respost* *please respost* *please respost*

'So you know someone with M.E.?' is a paper for M.E. patients to give to
friends and family members, to help them understand M.E. a bit better and
know how to be a good friend to someone who has M.E.

Two versions are available, the full-length 5 page version, or the 2 page
summary which is reprinted below.

The 2 page version is also available as a one page/one fold printable
leaflet download, for easy redistribution. (See below for links.)

-------

So you know someone with M.E.?: Summary, by Jodi Bassett, September 2009

www.hfme.org/soyouknowsomeonewithme.htm

So you know someone with M.E. (perhaps a friend/family member) and want to
know what to do and how to help?  Good on you! Here are some suggestions:


1. Offer acceptance, respect and emotional support.

Many people with M.E. have a history of terrible treatment and abuse from friends and family, as well as the medical profession thanks to the planned 'confusion' between M.E. and 'CFS.'

M.E. is a serious neurological disease. Treat your friend or family member no differently than you would treat them if they had multiple sclerosis or any other serious disease. (M.E. is in fact very similar to MS, medically at least, if not politically.) Your support may make all the difference in the world.


2. Learn the basic facts about M.E.

Learn that:

. M.E. is not fatigue or 'CFS' or 'CFIDS' or 'ME/CFS.'
. M.E. is not medically unexplained or mysterious. See: What is M.E.?
. M.E. is a serious neurological disease that is similar in many ways to MS
and has more than 60 neurological, cardiac, metabolic, gastrointestinal,
immunological and other symptoms. M.E. occurs in epidemic and sporadic forms
and can be tested for using a series of objective tests (including MRI and
SPECT brain scans).
. People with M.E. are made much sicker by physical activity (or being
upright or even thinking or taking in sensory input such as noise and light)
beyond their individual limits. This includes even seemingly minor
activities. Relapses can be severe and can last hours, days, weeks, months
or even years, or they can be permanent. (Deaths can also occur with severe
or repeated overexertion in M.E.)

Be aware of the uselessness and unreliability of virtually all information
on 'CFS,' 'CFIDS' and 'ME/CFS.'  The mainstream media are not credible
information sources, and nor are most 'CFS,' 'CFIDS' or 'ME/CFS' (or M.E.)
so-called advocacy groups.

It is also recommended that you learn how M.E. affects the person
individually by asking them about their illness. The simple fact of your
acceptance of this information shows your respect, and may mean a lot to
your friend.


3. Help the person with M.E. to rest, to avoid the sort of overexertion
which can lead to disease progression.

You can help by:
. Being adaptable about communication modes (calls/visits/emails etc.).
. Asking beforehand about the best time of day for calls/visits (no surprise
visits too!)
. Setting a time limit beforehand for calls or visits and being gracious
when the person has to cancel a visit or a call (or end it prematurely/very
suddenly).
. Not pressuring someone to do something that they've said they can't do, or
don't want to do, because of how much more ill it will make them.
. When a person is very severely ill, the only contact they may be able to
tolerate is for you to sit with them without talking, in their darkened
room. Some patients would very much appreciate such a gesture, if you are a
close friend.

M.E. is a hellish disease, but the good news is that you really do have the
power to make an enormous positive difference to the person you know with
M.E. - just by being there for them and offering practical and/or emotional
support but also by helping them avoid overexertion and so have their best
possible prognosis.


4. Encouraging your friend or family member to be more active when they have M.E. can harm them.

Even trivial levels of activity over their individual post-illness limits
can cause severe relapse or leave them wheelchair bound, or bedbound for
many long years afterward, or permanently. Overexertion can also cause death
in M.E. (often due to cardiac insufficiency).

Increasing activity levels is something every person with M.E. will do the
second they are able to, trust me! But arbitrarily increasing their activity
levels above what they can cope with can only ever be counterproductive.
It's a bit like telling someone with two broken legs to take up jogging, extremely painful, damaging and cruel - and of no possible benefit.


5. Remember that you can't tell how someone with M.E. is doing just by
looking.

Try not to make superficial judgements of ability or severity! M.E. is not a
stable illness. Observing the average M.E. sufferer for an hour - or even a
week or more - will not give an accurate indication of their usual activity
level because the severity of M.E. can wax and wane throughout the month,
week, day and even hour. Also, people with M.E. can occasionally operate
significantly above their actual illness level for short periods of time -
albeit at the cost of severe and prolonged worsening of the illness
afterward.

Just observing someone with M.E. do a certain task should not be taken to
mean (a) that they can necessarily repeat the task anytime soon, (b) that
they'd have been able to do it at any other time of day, (c) that they can
do the same task (or seemingly similar tasks) every hour, day or even every
week, or month, or (d ) that they could have done this same task without a
very long rest period beforehand of days or weeks, or (e) that they wont be
made very ill afterwards for a considerable period because they had to
really push themselves (and make themselves ill) to do the task.

Because the worsening of the illness caused by overexertion may not even
begin until 48 or more hours afterwards (when most observers are long gone),
it's impossible to tell by seeing an M.E. patient engaged in an activity,
whether that activity is so far beyond the patient's limits that it will end
up causing a severe or even permanent worsening of the illness (or
'relapse').

To be blunt, the activity may even end up killing the patient. Thus,
observers who see a patient engaged in an activity have no idea what the
consequences of this activity may be.


6. Remember that telling your friend or family member to 'think themselves
well' when they have M.E. is not helpful, kind or reasonable.

There is no more possibility that M.E. could be improved by positive
thinking/willpower any more than with MS or Parkinson's disease. If there
were, we would ALREADY no longer be ill. Nobody wants to get better more
desperately than M.E. patients do! Nobody.


7. Please don't recommend treatments you may have read about online, or in
the paper, or from friends.

The vast majority, very close to 100% of media articles about M.E. are in
fact talking about various diseases misdiagnosed as 'CFS' - people with all
sorts of very different and often much milder/transient diseases.

That isn't to say that there aren't treatments that can help with some
symptoms. There are and they can make a significant difference to a
patient's life. However, the person you know with M.E. will know far more
than you do about where to find legitimate information and which sources to
avoid.

If something really worked or there were anything like a cure, the M.E.
world is very well connected and VERY EXTREMELY motivated to get better, and
we would all KNOW very very quickly.


8. Some M.E. patients may appreciate some practical help.

You might like to ask the person you know with M.E. if they are in this
situation, you may then offer to:
. Do some shopping for them on a regular basis
. Help with meals or other household tasks
. Drive them to medical appointments and/or book their medical appointments
. Research something for them online e.g. disability services.
. Do anything they need doing that you are easily able to do.
. Read the papers on HFME relevant to carers


9. Be a good friend and let your friend continue to be a friend to you.

Remember that your friend is still in there and still has all the usual
hopes, dreams and desires. Cut them some slack if sometimes they're in a bad
mood, or feeling sad or angry.

We understand that even though we are dealing with a lot, your problems are
still important too. It isn't a competition, and less awful problems than
M.E. don't suddenly become easier to deal with just because someone you know
has M.E.

Remember that sounding happy is not the same as sounding healthy. Feel free
to comment on how happy someone sounds but don't assume that this means that
they're feeling better than usual.

Remember that although your friend may seem happy and seem to be coping -
and even if they are - they're still living every day under extreme stress,
with extreme pain and suffering with no end in sight. That takes a lot out
of you and is very draining and taxing and difficult. Most of us try to find
all the joy and happiness in small things as much as we can, to be able to
keep ourselves going. Many of us hide our suffering very well, particularly
after many years of being very ill, but that doesn't mean it isn't there.


10. Help get other friends/family members informed and on-side.

Explain to them calmly but firmly why M.E. isn't 'CFS' and why all the
information they have read about 'CFS' doesn't apply to M.E. Perhaps give
out some HFME leaflets. This information may be received better coming from
you rather than a patient.


11. Help get the wider community informed and on-side.

If you really want to get involved, you could distribute leaflets to your
street or your friends and co-workers or doctors in your area, or join the
HFME, or make a donation, and so on.


12. Just do your honest best.

Your friend with M.E. won't be expecting you to always do everything
perfectly, we understand that nobody is perfect but appreciate your taking
the time to try to at least avoid some of the biggest potential problems. By
reading this paper, you are already demonstrating that you care - so thank
you.

------------

This page is available here: www.hfme.org/soyouknowsomeonewithme.htm

If you would like to link to this page, please do so using the link above
only. If you'd like to download a Word or PDF version of this text, please
click on the above link.

A one-page summary of the facts of M.E., Hummingbirds, The misdiagnosis of
CFS and So you know someone with M.E.? are all now available in a printable
leaflet format.

So you know someone with M.E.? leaflet links:
www.hfme.org/Word/So_You_Know_Someone_With_ME_LEAFLET.doc
www.hfme.org/PDF/So_You_Know_Someone_With_ME_LEAFLET.pdf

To download all other leaflets please see:
www.hfme.org/documentdownloads.htm

Best wishes everyone,
Jodi Bassett
--
The Hummingbirds' Foundation
for Myalgic Encephalomyelitis:
www.hfme.org
--
I've had patients who met post-traumatic stress disorder criteria... where their trauma was their interaction with their physician around this illness. They came to a doctor with Chronic Fatigue Syndrome; they left the doctor with PTSD. -- Nancy Klimas, MD in a 2009 interview with the Miami Herald

No comments: