Thanks to Tom Kindlon for spotting this one about the Lightning Process
(Link below my signature) and, understandably, thinking he was in the Ads
section.
My response here. If you would like to try to help get a few landing on the
Letters Editor's desk, the e-mail address is citizen.letters@glosmedia.co.uk
Cheers
John
Gloucester Citizen Letters.
Long-term M.E. (Myalgic Encephalomyelitis) sufferers will have noticed that
Clare Hudman's diagnosis (Clare's found a way out of ME, Gloucester Citizen,
29 November 2007 ) changed by three tottering stepping stones from
Post-viral Fatigue Syndrome, to Chronic Fatigue Syndrome, to M.E. If anyone
thinks these are the same, why do they give them different names? They are
not synonymous or interchangeable. M.E. is a discrete neurological illness,
as recognised by the World Health Organisation.
They are different. There may be a clue in the numbers. No one is sure but
the 150,000 figure given here is widely agreed for M.E. sufferers. It's when
you call it CFS/M.E. that the range almost doubles to 240,000. If you were
to add TATT (tired all the time) it would increase to millions. M.E. is
certainly not fatigue as we usually understand it, nor does it respond to
the treatment that usually works - and is natural and free - sleep. This is
not to belittle chronic fatigue; it is very debilitating thing to have but
it is to make the distinction between it and M.E.
Whether Clare actually had M.E. or not, her story is the latest in a
worrying trend of articles promoting a kind of pyramid healing process, in
the same way that some people buy into a hyped miracle product that often
piles up in their garage unless they can sell it on to the next in the
chain, to pay off the investment, in this case, a four-figure training sum.
The story goes - just like Clare's - that they had tried everything and
never thought they'd be well again. A friend told them of a radical
treatment like the Lightning Process (there are others with similar
extravagant claims). They were sceptical but felt they had nothing to lose.
They tried it and were amazed and thrilled at the dramatic change in their
lives. Now they have trained to offer it to others. Like most stories that
seem too good to be true, it is.
Each radical treatment appears like a panacea for all ills from the lengthy
list of illnesses it claims to help. The founders admit, on their own
websites, that there is no scientific validation. Recommendations are based
on favourable testimonials but there is not, for balance, a section for
people who were dissatisfied that the treatment did not help them and who
may not be able to speak out because they are too ill, or fear some
consequences if they do. Treatments are given by people with questionable
qualifications - What on earth is an "personal development expert"? - who
teach each other, passing on the bills for training to the patient at the
end of the line. Average cost is about £80 a session which is as much as
most M.E. sufferers, on benefits, have for everything in a week. Now they
find they did have something to lose - several hundred pounds which could
buy some essentials for the patient who needs them, rather than some
luxuries for the therapist who doesn't.
Worst of all, these radical treatments offer false hope that is never
realised for M.E. sufferers. This organisation, together with other M.E.
support groups, believes that it is better to have no treatment at all than
one that leaves you with no lasting benefit or, like Graded Exercise
Treatment (GET), may even do irrecoverable harm to some and advises that
they are avoided until trustworthy research comes up with the physical cause
of M.E. which should in turn suggest an appropriate treatment on which they
can rely.
Yours sincerely
drjohngreensmith@mefreeforall.org
Dr John H Greensmith
ME Free For All. org
http://tinyurl.com/2ufpbz i.e
http://www.thisisgloucestershire.co.uk/displayNode.jsp?nodeId=231771&command
=displayContent&sourceNode=231773&contentPK=19103664&folderPk=108571&pNodeId
=231887
Clare's found a way out of ME
09:00 - 29 November 2007
There have been days when ME sufferer Clare Hudman spent 23 hours out of the
24 in bed.For seven years, the Stroud mum, struggled with the constraints of
her illness before stumbling on a course which changed her life.
Today, Clare, 49, is healthy and energetic and has retrained so that she can
help others rebuild their lives.
Clare, of Springhill, was diagnosed with Post-viral Fatigue Syndrome in her
early 40s, when her daughter was just five.
This condition is also known as Chronic Fatigue Syndrome or ME (myalgic
encephalomyelitis), which is recognised by the World Health Organisation as
condition characterised by long-term tiredness and other symptoms.
It is estimated 150,000 people in the UK have the condition.
Clare's illness began with a bad bout of flu followed by repeated infections
and although she expected to make a recovery, she never did.
"I ended up in bed 23 hours out of 24. I was unable to listen to the radio
and unable to read."
She always suffered from terrible tiredness and lack of energy.
"I learnt to manage my life around ME. I had to rest for three hours before
going out. I would wake up in the morning and wonder if I had the energy to
go into town - a five minute walk," she said.
Stairs were a problem so Clare would make sure she would take everything she
needed for the day downstairs in the morning.
After seven years of living with the condition, Clare had almost given up
hope, when a GP friend told her about the Lightning Process, which is not a
therapy but a training programme for thought processes. She travelled to
Wales in June 2006 to train
The Lightning Process involves physical and verbal exercises and a
combination of osteopathy, neurolinguistic programming (NLP), self-hypnosis
and life coaching.
The aim is to change thought processes which cause stress reactions in the
body.
Immediately after the three-day course, Clare went camping with her family.
The transformation in her health was dramatic. She was enjoying cliff top
walks and body surfing.
She was so delighted to have regained her energy, and indeed her life, that
after a year's study, she has now become qualified to teach the Lightning
Process.
"I started out feeling that there was no hope, then I learnt how to get
myself better, and now I'm able to teach other people and see them getting
better.
She said the process is not a cure but a tool for recovery which can have
dramatic effects on physical health.
"It's a training course to give you the tools to change yourlife and get a
life you love. I'm happier now than I can ever remember being."
* * *
[As a side note, in the US, it has been essentially impossible to get a diagnosis of ME since the term CFS was created in 1988, unlike the UK where ME is regularly diagnosed.]
If you are cured of your problems by "changing thought patterns", then you don't have the virus required for a True CFS diagnosis. Viruses respond to medication, they cannot be talked away or thought away. Those of us who have The Real Thing can think happy thoughts all we like, but it won't reduce the viral load to zero.
The difference is those "and other symptoms". Someone with chronic fatigue (the symptom, not the Syndrome) won't have the same other symptoms as someone with CFS (or ME, if you prefer). And someone with TATT (Tired All The Time) can be cured with a week of relaxing on a beach. If all your problems are fixed by sleep, you don't have what we're talking about when we say CFS. (Although, if you have CFS, some of your problems will be reduced by improving the quality/quantity of your sleep enough to let your immune system recharge.)
There are many snake oil salesmen out there eager to separate you from your money. Read their websites carefully. I was directed to one who had less than a 25% success rate; not something I wanted to gamble my last $10,000 on. Since developing CFS, I have a lot of allergies; his office would not even tell me whether there was anything in his Magic Pills that would set off my allergies unless I spent the $2000 for a first appointment; imagine that, paying $2000 just to be told "you can't take this". There's only one person who'd benefit from that arrangement, and it's not me. That was a red flag. Just as the only "lightning" most patients will find from Lightning Process is a lightening of their wallets.
The fact is, some CFS patients have "spontaneous remission". It happens whether you're being treated or not. If it happens when you're trying one of these snake oils, you may think it was the Magic Pills that cured you when it was actually just coincidence. My trick when I'm trying something new that seems to help is to stop after a month or so, and do without for a couple weeks to see if I backslide without it. Then I re-start and see whether I feel better. If I don't get another bounce when I re-start, then maybe the improvement was just coincidence.
And let's address another issue which is sometimes debated in trying to differentiate ME from CFS: fatigue. Some people believe that fatigue is not part of ME, and others point to writings from the 1930s (before there was CFS) that say it is. It's my experience that you can have ME/CFS without fatigue if you stay well within your limits; when I was still trying to do everything that needed doing around the house, I was constantly exhausted. When I took up Dr. Goudsmit's recommendations of pacing, which involve resting before you reach the point of collapse, even if all the tasks on your list aren't done, the exhaustion wasn't as big a problem. The house is a bigger mess, but I feel better. Since no one ever comes over to visit, there's no reason for me to kill myself keeping the house spotless the way I used to. If it's something that's going to be used again soon, I don't waste the energy putting it away. The Christmas tree gets put back in the box fully decorated; instead of needing to find an hour of energy to set it back up, I just need two seconds to pull it out of the box and fluff the branches.
When I decide that feeling better means that I'm getting well, and set out to do more than my limit, I have problems with exhaustion again.
But, for the most part, at this point, because I'm honoring my known limits, I don't feel exhausted any more. That's worth a messy house any day.
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