A Hummingbirds Guide to ME Newsletter - July/August 2008

[Guest guest]

Hello and welcome to the 'A Hummingbirds Guide to Myalgic Encephalomyelitis'

e-newsletter for July/August 2008

 

I hope this newsletter finds you and yours doing as well as possible.

 

I have a few new projects etc. to tell you about this month.

 

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'Treating M.E. - The Basics' has been fully updated and extended!

 

This paper was updated in July and now includes a new 'top10 treatments'

section, a short section on cancer and M.E. and how to reduce your risk,

information about how to avoid EMF radiation, a lot more information on diet

and the

importance of whole foods and balancing protein, carbs and fat, more

infomation on treatments to avoid (that can cause serious

relapses/deterioration),

information on tests you can have done privately that can help with

determining the best treatments, ways to save money on supplements without

sacrificing

quality, and lots more.

 

I recieved so much useful feedback after the July update however, that I

decided to act on some of it right away and so the paper was also updated

again,

and further extended, in August.

 

The section on diet was extended, and new sections were added about weight

loss and M.E., how to shop and prepare food more easily when you are ill,

which protein shakes are safest, and how to make meals that are liquid or

easier

to swallow.

 

A big thank you to everyone who offered suggestions and positive feedback.

See:

_http://www.ahummingbirdsguide.com/treatingmethebasics.htm_

(http://www.ahummingbirdsguide.com/treatingmethebasics.htm)

 

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Six new recommended articles:

 

 

1. Phone call with Dr Hyde! by LK Wooduff

 

Thank you to LK Woodruff for speaking for so many of us legitimate M.E.

advocates. (This page also includes links to a new minor paper co-authored by

Dr

Hyde concerning thyroid abnormalities in M.E.)

See: _http://www.ahummingbirdsguide.com/wlkwoodruffpapers.htm_

(http://www.ahummingbirdsguide.com/wlkwoodruffpapers.htm)

 

 

2. 'Fair' name? by LK Wooduff

 

" Studies done on mixed patient groups only produces mixed results (data).

And that makes the data irrelevant. It's a waste of time, money and effort. It

helps no one. Which is exactly what the past 20 years have been all about. "

See: _http://www.ahummingbirdsguide.com/wlkwoodruffpapers.htm_

(http://www.ahummingbirdsguide.com/wlkwoodruffpapers.htm)

 

 

3. Response to Deliberate Deceit or Inexcusable Ignorance? by LK Wooduff

See: _http://www.ahummingbirdsguide.com/wlkwoodruffpapers.htm_

(http://www.ahummingbirdsguide.com/wlkwoodruffpapers.htm)

 

 

4. Response to ME/CFS -Successful Antiviral Treatment by LK Wooduff

See: _http://www.ahummingbirdsguide.com/wlkwoodruffpapers.htm_

(http://www.ahummingbirdsguide.com/wlkwoodruffpapers.htm)

 

 

5. Response to Seven genetic types of ME found + Kerr's small studies

findings posted by LK Wooduff

 

'Regarding the postings on Kerr's studies (see today's Co-Cure): Kerr

continues to use the Wessely School's 'psychosocial' term of 'CFS/ME'.... Yet

he

finally now publicly admits that all of his studies are based on the Fukuda, et

al, criteria for 'CFS': " We analyzed gene expression in peripheral blood

from 25 patients with CFS diagnosed according to the Centers for Disease

Control and Prevention diagnostic criteria... " So one has to ask: WHY IS ME

BEING

MENTIONED/ADDED AT ALL?!

 

It seems highly unlikely that any of them are ME-defined (Ramsey, Hyde,

etc.). Please all, do not go spreading these findings from this very tiny study

as though they are eye opening or earth shattering, as they are not. They are

simply interesting studies done on on a very tiny group of individuals who

meet a very broad criteria. It is Kerr's perogative to do studies based on

'CFS' (Fukuada, et al) if he wishes, though how anyone expects to discover

anything relevant when studying such a broad 'syndrome' based on 'fatigue' is

confounding.

 

If small inconsistencies are being found amongst these 'mixed groups of

patients' - just imagine what could/would be uncovered if these researchers

would

focus solely on ME, G93.3, Neurogenic patients. Now that could blow things

wide open, and actually initiate some scientific progress!'

See: _http://www.ahummingbirdsguide.com/wlkwoodruffpapers.htm_

(http://www.ahummingbirdsguide.com/wlkwoodruffpapers.htm)

 

 

6. Th1 and Th2, cancer and M.E. by M.E. sufferer Lesley

See: _http://www.ahummingbirdsguide.com/treatingmeantioxidants.htm#223067448_

(http://www.ahummingbirdsguide.com/treatingmeantioxidants.htm#223067448)

 

 

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Joining the 25% M.E. Group in the UK...

 

If you've ever thought about joining the 25% group, but were too ill to work

out how to get a cheque in pounds sterling, there is some good news - you

can now join the group or make donations online using Paypal! (Check out the

groups' homepage for the link.)

 

There are a number of benefits to joining the 25% group, which you can read

about on their site. One benefit you might not know about is that as a member

you get access to the group's exclusive " Contact List " for severe ME

sufferers; a very useful list if you would like a penpal or email friend with

M.E.

to talk to and are having trouble finding one due to illness.

 

For more infomation on the 25% Group or becoming a member, email

_enquiry_ (enquiry) or see:

_http://www.25megroup.org_ (http://www.25megroup.org)

 

It is just as important that we support those very very few groups that

haven't sold us out and are doing some good work as it is that we stand against

all the useless propaganda supporting ones that work against our best

interests. Keep up the good work (and the not selling out!) 25% group!

 

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South West France ME friendly holiday discount!

 

Jilly Kirby says:

 

'I have a house in south west france, it has 4 kingsize bedrooms, it is an

hour south of bordeaux, not coastal but lovely lakes you can swim in. I am

thinking of doing bed and breakfast for M.E. sufferers at a discounted rate. As

a sufferer myself I would love to help people with my condition. I can

arrange for pick up at the airport. I thought people might be more comfortable

with someone who has been through what they have and is a little bit better,

albeit after 25 years.'

For more information please email Jilly at: _jkassoc99_

(jkassoc99)

 

(I have nothing to do with this offer myself, I just offered to send a

notice about it to some M.E. groups for Jilly. I really do wish I were in a

position to take her up on it though!)

 

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If you get in quick and buy before August 31st, iHerb has an amazing 99c

shipping offer - including international orders!!

 

See: _http://www.iherb.com_ (http://www.iherb.com)

 

(Plus get an extra 5$ discount with my code of JOD573 )

 

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That's it for this month!

 

All the best, as always, in your ongoing battle with M.E. or your loved

one's battle with M.E., until next month,

 

Jodi Bassett

--

A Hummingbirds Guide to Myalgic Encephalomyelitis:

_www.ahummingbirdsguide.com_ (http://www.ahummingbirdsguide.com)

 

I have been ill with ME for 13 years now and I am 26 years old at the

moment. My illness is becoming progressively worse all the time. I can not walk

or

stand, I am wheelchair bound and housebound. 95% of the day I am bed bound. I

am often too weak to turn in bed or chew food or talk. I have been abused

and neglected by the medical staff, not recognising ME as a real neurological

illness. I don't get any medical help. I am so fed-up with all the 'ME/CFS'

sites and message boards where people think that ME is the same thing as

tiredness or CFS. Comparing tiredness with ME is the same thing as comparing a

pimple with fatal cancer. ME is the worst nightmare there is. Severe M.E.

sufferer

 

Far too many Drs, researchers and even (often self-claimed) experts are

continuing to lump ME, a neurogenic illness classified by the WHO under G93.3,

with 'CFS' (Fukada, et al), which is based on 'fatigue' and is referred to as

'ill-defined', etc. Understanding the significant differences is not

difficult, when one is familiar with ME and knows what to look for. PLEASE do

all that

you can to rectify this untennable situation!! Please share this

information. Too many years have been wasted already...too many lives already

lost. YOU

can do this, if you just decide to. LK Woodruff

 

GENETICS AND M.E. By Gurli Bagnall 'If science is to follow this line of

inquiry, then let it be honest with realistic terms of reference. As it stands,

it could well be another route to the psychiatric dustbin. In fact, with the

endorsement of people like Simon Wessely, it is a certainty.'

--

 

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