MAY BE REPOSTED
MEA letter to Rt Hon James Purnell, Secretary of State for Work and Pensions, available at:
http://www.meassoci ation.org. uk/content/ view/611/ 70
ENDS
Friday, 25 July 2008
Thursday, 24 July 2008
EXTREMELY URGENT – Re Prof Basant Puri Study – PERMISSION TO
> EXTREMELY URGENT – Re Prof Basant Puri Study – PERMISSION TO
REPOST.
>
> Calling all physically fit carers, friends and relatives of ME
> patients. Your help is very urgently needed and may be of great
> assistance to the UK ME community.
>
> Professor Basant Puri urgently needs 10 PHYSICALLY FIT individuals
> between the ages of 18 to 55 to contact him concerning
participation
> in his current ME/CFS biomedical brain studies on ME/CFS patients.
> These individuals will act as healthy `control-subjects' in his
study
> and must not have ME/CFS or have had any major illness. They will
> attend Hammersmith Hospital on ONE of two dates in London (Sunday
3
> August OR Sunday 10 August 2008) for MRI brain-imaging, cognitive
> function tests and an EEG. Candidates must not have any metal
> implants in their body in order to go through the MRI scanner:
most
> dental work is safe in this respect but needs to be mentioned to
> Professor Puri to be verified. Participants who have worked with
> grinding metals/sparks must also mention this. There is also space
> for one more properly diagnosed ME patient to participate in the
> study on one of these dates.
>
> Participants will need to fund their own travel costs but there is
> ample parking available in the Hammersmith Hospital car park.
Please
> do NOT contact me about this matter but please do contact
Professor
> Puri direct as soon as you can for full details if you can
> help/participate. His email address is:
>
> basant.puri@ ...
>
> It is very important for the ME community that this work is
completed
> as soon as possible and that these study slots are filled. PLEASE
> HELP. Treat yourself to an interesting trip to London in aid of a
> good cause!
>
> Many thanks indeed.
>
> Kev Short.
> Anglia ME Action.
>
> PERMISSION TO REPOST.
REPOST.
>
> Calling all physically fit carers, friends and relatives of ME
> patients. Your help is very urgently needed and may be of great
> assistance to the UK ME community.
>
> Professor Basant Puri urgently needs 10 PHYSICALLY FIT individuals
> between the ages of 18 to 55 to contact him concerning
participation
> in his current ME/CFS biomedical brain studies on ME/CFS patients.
> These individuals will act as healthy `control-subjects' in his
study
> and must not have ME/CFS or have had any major illness. They will
> attend Hammersmith Hospital on ONE of two dates in London (Sunday
3
> August OR Sunday 10 August 2008) for MRI brain-imaging, cognitive
> function tests and an EEG. Candidates must not have any metal
> implants in their body in order to go through the MRI scanner:
most
> dental work is safe in this respect but needs to be mentioned to
> Professor Puri to be verified. Participants who have worked with
> grinding metals/sparks must also mention this. There is also space
> for one more properly diagnosed ME patient to participate in the
> study on one of these dates.
>
> Participants will need to fund their own travel costs but there is
> ample parking available in the Hammersmith Hospital car park.
Please
> do NOT contact me about this matter but please do contact
Professor
> Puri direct as soon as you can for full details if you can
> help/participate. His email address is:
>
> basant.puri@ ...
>
> It is very important for the ME community that this work is
completed
> as soon as possible and that these study slots are filled. PLEASE
> HELP. Treat yourself to an interesting trip to London in aid of a
> good cause!
>
> Many thanks indeed.
>
> Kev Short.
> Anglia ME Action.
>
> PERMISSION TO REPOST.
Wednesday, 16 July 2008
Website for patients to rate GPs and hospital consultants
Website for patients to rate GPs and hospital consultants
A website launching today, iwantgreatcare.org, will let patients rate and review every medic who has treated them
http://www.iwantgreatcare.org/
A website launching today, iwantgreatcare.org, will let patients rate and review every medic who has treated them
http://www.iwantgreatcare.org/
Letter #4 in reply to "You ain't crazy. It might be Chronic Fatigue Syndrome
Letter #4 in reply to "You ain't crazy. It might be Chronic Fatigue Syndrome" in Frost Illustrated, Fort Wayne, Indiana, USA, 8 July 2008
I'm reposting Mary Schweitzer's letter here, as the link is a bit
confusing~~Liz
Thank you for taking the disease so misnamed, "Chronic Fatigue
Syndrome," more seriously than the media normally does. I have been
fighting this illness for two decades, however, and, regrettably, at
this stage of the game everything is NOT going to be all right for
those who have it.
I have been in cutting edge studies that show I have an abnormal
immune
defect in the body's biochemical antiviral pathway which makes it
extremely difficult to fend off viruses, and I also have a low
natural
killer cell count. I have chronically recurring Epstein-Barr, and a
vicious virus originally discovered in AIDS patients called HHV-6A
(Human Herpesvirus 6, Variant A), which gave me muscle pain,
encephalitis, and significant CNS disruption - in other words,
Myalgic
Encephalomyelitis, which was what the disease was called in Britain
before the U.S. NIH came up with the name "chronic fatigue syndrome"
(at the time believing it was chronic Epstein-Barr virus). A
scientific committee voted (not unamimously) for the new name, but it
was promoted by the head of infectious diseases at NIH at the time.
HHV-6, Variant B, causes roseola and is very common. It is not
possible
at the moment for commercial laboratories to distinguish between the
variants, so there can be a lot of confusion. However, an active
case
of HHV-6 in an adult usually means they have Variant A.
The disease caused terrible pain in addition to the muscle aches:
migraine-level headaches, and constant severe pain behind my eyes and
in the back of my neck. I had trouble understanding what was said to
me, and trouble saying what I meant - I would often use an entirely
wrong word, such as "map" for "tablecloth". I once poured an entire
cup of coffee into a silverware drawer convinced it was a cup. I had
ataxia, which made it difficult to walk and impossible to perform
normal functions like loading a dishwasher - I would slam one glass
unto another, unable to gauge the distance properly. Eventually I
became too weak to walk even a few feet. I only left the house if
someone in the family took me in a wheelchair, which they had to
push,
and I was mostly bedridden. Years later, when I was much better, I
still scored so low on an oxygen-reuptake treadmill test that I would
be considered permanently disabled on that basis alone.
I benefitted from an experimental drug that was both an antiviral and
an immune modulator, "Ampligen," which is unfortunately still in
Phase
III development. In six months, my biomarkers were gone. I could
read
again, walk again (though slowly), drive a car again. I cannot
explain
the sheer joy of being able to walk on a beach when you thought you
never would again. And I danced at my son's wedding that August.
The cost to my family for that one drug,which required twice weekly
infusions, was $20,000 in cash. I lost the drug in February. The
last
time I had to go off it,I did well for a year, and then relapsed
badly.
I am not looking forward to a repeat of that relapse, and hope that
perhaps a combination of an antiviral such as Valcyte (being used at
Stanford by Robert Montoya) and perhaps IM gamma globulin can help me
stave off a reappearance of HHV-6A and the 37kDa Rnase-L immune
defect.
I am fortunate in having been a college professor, married to a
college
professor, and therefore familiar with the means to find out what
testing, and what experimental drugs, might be available to me. It
took four years from my first collapse in my office before I finally
tested positive for something, however. And I was lucky that
Ampligen
worked for me, and that my family was willing (and able) to sacrifice
so we could pay for it.
Think about what was said in your own article: only 15% (10% by some
studies) of patients have any idea what is wrong with them. The vast
majority of those with a diagnosis are white and upper middle class.
That tells you something about who is not being diagnosd. I live
near
a major east coast city and there is no doctor in driving distance
who
understands my disease. Nobody in public clinics understands it.
I was sicker than most people who have it - I seemed to have a
progressive form, what some British patients call a "twenty-five
percenter" because they believe 25 percent have the disease that
badly. But imagine what my life would have been like without my
family, and without access to medical care. For me, it was not a
matter of finding work difficult - even working a cash register at
McDonald's would have been impossible. I know people with the
disease
who had to live on the streets for a time - I am certain there must
be
more. I used to have blackouts - what happens to a person who has
blackouts but nobody believes there is anything wrong wih them? What
happens to people as sick as I was, without medical care or a family
to
take care of them?
Three years ago, the 23-year-old son of a dear friend died in his
sleep. He had been diagnosed with chronic fatigue syndrome since
puberty. But the autopsy showed that he died of a longstanding viral
infestation - he died of myocarditis. There have been other deaths.
The CDC simply change the diagnosis when one is brought to their
attention.
Ultimately, Chronic Fatigue Syndrome is a misdiagnosis. I have an
abnormal immune system and am beset with disabling viruses, and I
have
the biomarkers to prove it. Other people diagnosed with CFS may have
different medical problems - but they are all serious. In bundling
them all together unto a vague concept of tiredness, the CDC has done
us all a great disservice - and in the process, endangered the health
of the nation. A million people have CFS according to the best
independent study - and many of us were contageous at some point in
the
disease. The name tells you nothing - chronic fatigue on this level
is
also part of congestive heart failure, tuberculosis, hepatitis - most
serious diseases. It did lead me to scientists working on biomarkers
and treatments, but for most of the public the name has prevented
appropriate diagnosis and treatment.
Thank you again for bringing this heartbreaking disease to the
public's
attention.
Mary Schweitzer
I'm reposting Mary Schweitzer's letter here, as the link is a bit
confusing~~Liz
Thank you for taking the disease so misnamed, "Chronic Fatigue
Syndrome," more seriously than the media normally does. I have been
fighting this illness for two decades, however, and, regrettably, at
this stage of the game everything is NOT going to be all right for
those who have it.
I have been in cutting edge studies that show I have an abnormal
immune
defect in the body's biochemical antiviral pathway which makes it
extremely difficult to fend off viruses, and I also have a low
natural
killer cell count. I have chronically recurring Epstein-Barr, and a
vicious virus originally discovered in AIDS patients called HHV-6A
(Human Herpesvirus 6, Variant A), which gave me muscle pain,
encephalitis, and significant CNS disruption - in other words,
Myalgic
Encephalomyelitis, which was what the disease was called in Britain
before the U.S. NIH came up with the name "chronic fatigue syndrome"
(at the time believing it was chronic Epstein-Barr virus). A
scientific committee voted (not unamimously) for the new name, but it
was promoted by the head of infectious diseases at NIH at the time.
HHV-6, Variant B, causes roseola and is very common. It is not
possible
at the moment for commercial laboratories to distinguish between the
variants, so there can be a lot of confusion. However, an active
case
of HHV-6 in an adult usually means they have Variant A.
The disease caused terrible pain in addition to the muscle aches:
migraine-level headaches, and constant severe pain behind my eyes and
in the back of my neck. I had trouble understanding what was said to
me, and trouble saying what I meant - I would often use an entirely
wrong word, such as "map" for "tablecloth". I once poured an entire
cup of coffee into a silverware drawer convinced it was a cup. I had
ataxia, which made it difficult to walk and impossible to perform
normal functions like loading a dishwasher - I would slam one glass
unto another, unable to gauge the distance properly. Eventually I
became too weak to walk even a few feet. I only left the house if
someone in the family took me in a wheelchair, which they had to
push,
and I was mostly bedridden. Years later, when I was much better, I
still scored so low on an oxygen-reuptake treadmill test that I would
be considered permanently disabled on that basis alone.
I benefitted from an experimental drug that was both an antiviral and
an immune modulator, "Ampligen," which is unfortunately still in
Phase
III development. In six months, my biomarkers were gone. I could
read
again, walk again (though slowly), drive a car again. I cannot
explain
the sheer joy of being able to walk on a beach when you thought you
never would again. And I danced at my son's wedding that August.
The cost to my family for that one drug,which required twice weekly
infusions, was $20,000 in cash. I lost the drug in February. The
last
time I had to go off it,I did well for a year, and then relapsed
badly.
I am not looking forward to a repeat of that relapse, and hope that
perhaps a combination of an antiviral such as Valcyte (being used at
Stanford by Robert Montoya) and perhaps IM gamma globulin can help me
stave off a reappearance of HHV-6A and the 37kDa Rnase-L immune
defect.
I am fortunate in having been a college professor, married to a
college
professor, and therefore familiar with the means to find out what
testing, and what experimental drugs, might be available to me. It
took four years from my first collapse in my office before I finally
tested positive for something, however. And I was lucky that
Ampligen
worked for me, and that my family was willing (and able) to sacrifice
so we could pay for it.
Think about what was said in your own article: only 15% (10% by some
studies) of patients have any idea what is wrong with them. The vast
majority of those with a diagnosis are white and upper middle class.
That tells you something about who is not being diagnosd. I live
near
a major east coast city and there is no doctor in driving distance
who
understands my disease. Nobody in public clinics understands it.
I was sicker than most people who have it - I seemed to have a
progressive form, what some British patients call a "twenty-five
percenter" because they believe 25 percent have the disease that
badly. But imagine what my life would have been like without my
family, and without access to medical care. For me, it was not a
matter of finding work difficult - even working a cash register at
McDonald's would have been impossible. I know people with the
disease
who had to live on the streets for a time - I am certain there must
be
more. I used to have blackouts - what happens to a person who has
blackouts but nobody believes there is anything wrong wih them? What
happens to people as sick as I was, without medical care or a family
to
take care of them?
Three years ago, the 23-year-old son of a dear friend died in his
sleep. He had been diagnosed with chronic fatigue syndrome since
puberty. But the autopsy showed that he died of a longstanding viral
infestation - he died of myocarditis. There have been other deaths.
The CDC simply change the diagnosis when one is brought to their
attention.
Ultimately, Chronic Fatigue Syndrome is a misdiagnosis. I have an
abnormal immune system and am beset with disabling viruses, and I
have
the biomarkers to prove it. Other people diagnosed with CFS may have
different medical problems - but they are all serious. In bundling
them all together unto a vague concept of tiredness, the CDC has done
us all a great disservice - and in the process, endangered the health
of the nation. A million people have CFS according to the best
independent study - and many of us were contageous at some point in
the
disease. The name tells you nothing - chronic fatigue on this level
is
also part of congestive heart failure, tuberculosis, hepatitis - most
serious diseases. It did lead me to scientists working on biomarkers
and treatments, but for most of the public the name has prevented
appropriate diagnosis and treatment.
Thank you again for bringing this heartbreaking disease to the
public's
attention.
Mary Schweitzer
Tuesday, 15 July 2008
Three letters published in response to the "Ain't crazy" article
Three letters published in response to the "Ain't crazy" article
Jackie Leevers here
http://www.frostillustrated.com/full.php?sid=3859
John Greensmith here
http://www.frostillustrated.com/full.php?sid=3861
Hilary Patten here
http://www.frostillustrated.com/full.php?sid=3860
Well done.
Best wishes
John
Jackie Leevers here
http://www.frostillustrated.com/full.php?sid=3859
John Greensmith here
http://www.frostillustrated.com/full.php?sid=3861
Hilary Patten here
http://www.frostillustrated.com/full.php?sid=3860
Well done.
Best wishes
John
A message from Professor Malcolm Hooper
Permission to Repost
A message from Professor Malcolm Hooper
"Attention is drawn to the recently-released apology from the Journal of
Clinical Pathology regarding the alleged retraction of the Review 'Myalgic
Encephalomyelitis: a review with emphasis on key findings in biomedical
research' by Professor Malcolm Hooper. Professor Hooper notes that the
immoderate and malicious comments which were posted on the internet
regarding his paper have been shown to be false. He is saddened that such
comments from those who profess to have the best interests of the ME
community at heart have caused distress, dismay and confusion within the
wider ME community".
------------ --------- --------- --------- --------- --------- -
http://jcp.bmj. com
http://jcp.bmj. com/misc/ hooper.dtl
The BMJ Group wishes to inform readers that a series of technical errors
resulted in the unjustified retraction of the article "Myalgic
encephalomyelitis: a review with emphasis on key findings in biomedical
research". The article's citation details remain as originally published
(J Clin Pathol 2007; 60: 466 - 471; doi:10.1136/ jcp.2006. 042408).
The Journal of Clinical Pathology offers an unreserved apology to the
author of the article, Professor Malcolm Hooper, and regrets any confusion
or distress that may have been caused.
------------ --------- --------- --------- --------- --------- -
Note: The Original Paper can now be found back on teh JCP website
http://jcp.bmj. com/cgi/content/ abstract/ 60/5/466? maxtoshow= &HITS=10& hits=10&RESULTFO RMAT=&author1= hooper&andorexac tfulltext= and&searchid= 1&FIRSTINDEX= 0&sortspec= relevance& resourcetype= HWCIT
A message from Professor Malcolm Hooper
"Attention is drawn to the recently-released apology from the Journal of
Clinical Pathology regarding the alleged retraction of the Review 'Myalgic
Encephalomyelitis: a review with emphasis on key findings in biomedical
research' by Professor Malcolm Hooper. Professor Hooper notes that the
immoderate and malicious comments which were posted on the internet
regarding his paper have been shown to be false. He is saddened that such
comments from those who profess to have the best interests of the ME
community at heart have caused distress, dismay and confusion within the
wider ME community".
------------ --------- --------- --------- --------- --------- -
http://jcp.bmj. com
http://jcp.bmj. com/misc/ hooper.dtl
The BMJ Group wishes to inform readers that a series of technical errors
resulted in the unjustified retraction of the article "Myalgic
encephalomyelitis: a review with emphasis on key findings in biomedical
research". The article's citation details remain as originally published
(J Clin Pathol 2007; 60: 466 - 471; doi:10.1136/ jcp.2006. 042408).
The Journal of Clinical Pathology offers an unreserved apology to the
author of the article, Professor Malcolm Hooper, and regrets any confusion
or distress that may have been caused.
------------ --------- --------- --------- --------- --------- -
Note: The Original Paper can now be found back on teh JCP website
http://jcp.bmj. com/cgi/content/ abstract/ 60/5/466? maxtoshow= &HITS=10& hits=10&RESULTFO RMAT=&author1= hooper&andorexac tfulltext= and&searchid= 1&FIRSTINDEX= 0&sortspec= relevance& resourcetype= HWCIT
Monday, 14 July 2008
ME Research UK DVD
*****Please Repost and Disseminate to Your Local Groups*****
ME Research UK are pleased to offer the 4-DVD set of this year’s Cambridge
ME conference for just £5 inclusive of post and packing (within the UK).
At this price why not buy extra copies for your GP, Consultant and MP?
Why not take advantage of this excellent opportunity to send this
information to as large a number of professionals as possible.
If you would like them to, MERUK will, for no extra charge, send DVDs direct
to your doctor with a covering letter. Just let us have your doctor’s name
and address and we will do the rest.
You can order your DVDs by contacting meruk@pkavs. org.uk or writing to: ME
Research UK, The Gateway, North Methven Street, Perth PH1 5PP, UK. Please
make cheques out to “ME Research UK”.
We can also take credit/debit card orders over the phone on 01738 451234
during working hours.
Full details of the presentations can be found on the MERUK website at:
http://www.meresear ch.org.uk/ archive/newhoriz ons2008.html
Sue Waddle
ME Research UK
ME Research UK are pleased to offer the 4-DVD set of this year’s Cambridge
ME conference for just £5 inclusive of post and packing (within the UK).
At this price why not buy extra copies for your GP, Consultant and MP?
Why not take advantage of this excellent opportunity to send this
information to as large a number of professionals as possible.
If you would like them to, MERUK will, for no extra charge, send DVDs direct
to your doctor with a covering letter. Just let us have your doctor’s name
and address and we will do the rest.
You can order your DVDs by contacting meruk@pkavs. org.uk or writing to: ME
Research UK, The Gateway, North Methven Street, Perth PH1 5PP, UK. Please
make cheques out to “ME Research UK”.
We can also take credit/debit card orders over the phone on 01738 451234
during working hours.
Full details of the presentations can be found on the MERUK website at:
http://www.meresear ch.org.uk/ archive/newhoriz ons2008.html
Sue Waddle
ME Research UK
Sunday, 13 July 2008
May 12, 2009 - Carers Demo
Hi -
Permission to repost
May
12, 2009 - Carers Demo
Has
anyone given any thought to the above, there are a few who think that carers
are a good untapped resource when it comes to campaigning, and all it would
take would be one carer per sufferer to give up one day next year? There are an
estimated 25,000 in London alone and tens of thousands elsewhere in the UK.
The
idea is one carer per sufferer to attend a rally/demo in London on May 12 next
year, enough carers could actually bring London to a stop or clog up the
pathways, keeping on the move and continuously crossing the roads at designated
crossing points. By keeping on the move and to the pavements there could be no
legal problems.
The
idea currently is as follows
One
sufferer pre carer attends London on the day and make their way to Whitehall,
each carrying two A4 photos or silhouettes representing the person they care
for along with that persons Christian Name, along with 2 or 3 letters signed by
themselves (wording to be decided) asking for funding for Biochemical research,
(individual letters are better than a petitions).
A
static group to remain in Whitehall and receive two letters and 1 silhouette
from each carer as they pass, the times can be staggered. The carers can then
make their way to Parliament Square and Parliament Green, ready for lobby time.
At
a set time there can be a presentation of 1 letter and 1 silhouette to 10
Downing Street, and 1 letter to the DoH, the presentation party and any other
remaining carers make their way then to Parliament to join the rest.
Lobby
time and the main presentation group with as many as possible going into
Parliament to hand the last letter and silhouette to their MP or one willing to
accept it. After which at a certain time we can all regroup on the green or square
prior to making our way home.
Arriving
in small groups and staggered means that anyone with only a few hours to spare
and living in London may well have a chance to attend and make a difference.
The
above is a suggestion only; nothing is confirmed or set in tablets of stone,
there may be those who think it totally unworkable, there may be those who think
it worth a try, for those that do how many of you are there and are you willing
to make the trip to London? Is it worth it full stop?
Trev
Permission to repost
May
12, 2009 - Carers Demo
Has
anyone given any thought to the above, there are a few who think that carers
are a good untapped resource when it comes to campaigning, and all it would
take would be one carer per sufferer to give up one day next year? There are an
estimated 25,000 in London alone and tens of thousands elsewhere in the UK.
The
idea is one carer per sufferer to attend a rally/demo in London on May 12 next
year, enough carers could actually bring London to a stop or clog up the
pathways, keeping on the move and continuously crossing the roads at designated
crossing points. By keeping on the move and to the pavements there could be no
legal problems.
The
idea currently is as follows
One
sufferer pre carer attends London on the day and make their way to Whitehall,
each carrying two A4 photos or silhouettes representing the person they care
for along with that persons Christian Name, along with 2 or 3 letters signed by
themselves (wording to be decided) asking for funding for Biochemical research,
(individual letters are better than a petitions).
A
static group to remain in Whitehall and receive two letters and 1 silhouette
from each carer as they pass, the times can be staggered. The carers can then
make their way to Parliament Square and Parliament Green, ready for lobby time.
At
a set time there can be a presentation of 1 letter and 1 silhouette to 10
Downing Street, and 1 letter to the DoH, the presentation party and any other
remaining carers make their way then to Parliament to join the rest.
Lobby
time and the main presentation group with as many as possible going into
Parliament to hand the last letter and silhouette to their MP or one willing to
accept it. After which at a certain time we can all regroup on the green or square
prior to making our way home.
Arriving
in small groups and staggered means that anyone with only a few hours to spare
and living in London may well have a chance to attend and make a difference.
The
above is a suggestion only; nothing is confirmed or set in tablets of stone,
there may be those who think it totally unworkable, there may be those who think
it worth a try, for those that do how many of you are there and are you willing
to make the trip to London? Is it worth it full stop?
Trev
Cognitive Behaviour Therapy (CBT
Thanks again to John GreenSmith for bringing this to our attention
Letter in response to the conclusions of a conference, this week, in East Anglia, that the view that
Cognitive Behaviour Therapy (CBT) is more effective than other treatments is just a myth and could
be wasting millions of pounds.
here http://www.mefreeforall.org/2008-Jul...
The Daily Mail version of the story is here http://tinyurl.com/62t3td
The story, quoting Professors Mick Cooper & Robert Elliott of Strathclyde University also appeared in The Glasgow Herald.
here http://tinyurl.com/5oxv9d
If you wish to reply, the e-mail addresses are:
letters@dailymail.co.uk
letters@theherald.co.uk
Letter in response to the conclusions of a conference, this week, in East Anglia, that the view that
Cognitive Behaviour Therapy (CBT) is more effective than other treatments is just a myth and could
be wasting millions of pounds.
here http://www.mefreeforall.org/2008-Jul...
The Daily Mail version of the story is here http://tinyurl.com/62t3td
The story, quoting Professors Mick Cooper & Robert Elliott of Strathclyde University also appeared in The Glasgow Herald.
here http://tinyurl.com/5oxv9d
If you wish to reply, the e-mail addresses are:
letters@dailymail.co.uk
letters@theherald.co.uk
Friday, 11 July 2008
You ain't crazy. It might be Chronic Fatigue Syndrome
Letter #4 in response to "You ain't crazy. It might be Chronic Fatigue Syndrome" in Frost Illustrated, Fort Wayne, Indiana, USA, 8 July 2008 from Dr Mary Schweitzer, here
http://www.mefreeforall.org/2008-Jul...
with the others on the same subject.
Brilliant, personal account, strongly supported by firm scientific evidence. Just how it should be.
We have some quite similar medical history, Mary and very similar views about this dreadful illness. Do please keep writing.
The good news is that 2 of these writers have heard that they may be published. See, it works. Any more? Or some new blood maybe?
To remind you, the original News item is here
here http://tinyurl.com/6a6yfs
and if you have a reply, you need to make it using the online form
here http://www.frostillustrated.com/send...
Cheers
John
drjohngreensmith@mefreeforall.org
http://www.mefreeforall.org/2008-Jul...
with the others on the same subject.
Brilliant, personal account, strongly supported by firm scientific evidence. Just how it should be.
We have some quite similar medical history, Mary and very similar views about this dreadful illness. Do please keep writing.
The good news is that 2 of these writers have heard that they may be published. See, it works. Any more? Or some new blood maybe?
To remind you, the original News item is here
here http://tinyurl.com/6a6yfs
and if you have a reply, you need to make it using the online form
here http://www.frostillustrated.com/send...
Cheers
John
drjohngreensmith@mefreeforall.org
Wednesday, 9 July 2008
APPG on ME
MAY BE REPOSTED
All four transcripts of the presentations on child protection issues given to the July meeting of the All Party Parliamentary Group (APPG) on ME at the House of Commons are now available on the MEA website:
http://www.meassoci ation.org. uk/content/ view/603/ 70/
Summary of APPG meeting:
http://www.meassoci ation.org. uk/content/ view/601/ 70/
ENDS
All four transcripts of the presentations on child protection issues given to the July meeting of the All Party Parliamentary Group (APPG) on ME at the House of Commons are now available on the MEA website:
http://www.meassoci ation.org. uk/content/ view/603/ 70/
Summary of APPG meeting:
http://www.meassoci ation.org. uk/content/ view/601/ 70/
ENDS
Tuesday, 8 July 2008
£2000, to MERUK,
"We have just handed over £2000, to MERUK, to help with research. Thank you to all who helped raise this money during the month of MAY. Your generosity will never be forgotten.
Rail transport for the disabled - your views are wanted in a research survey
The MEA has been asked to give some publicity to a new piece of research that is seeking the views of people with disabilities and chronic health problems who travel by train in the South East, or would like to travel by train but are unable to do so for various reasons.
More information on the survey at:
http://www.meassoci ation.org. uk/content/ view/602/ 70/
More information on the survey at:
http://www.meassoci ation.org. uk/content/ view/602/ 70/
Sunday, 6 July 2008
in response to an article about Hypocondria,
Two letters already
here http://www.mefreeforall.org/2008-Jul-Sep.1017.0.html#c3717
and
here http://www.mefreeforall.org/2008-Jul-Sep.1017.0.html#c3716
in response to an article about Hypocondria, which drags in a mention of Chronic Fatigue Syndrome and, by doing so -- even if only by implication -- suggests that it is not of physiological but psychatric origin.
Full story here http://tinyurl.com/667wrk
If we do not respond to stories like these it may be thought that we agree, or are at least acquiescent about the view that it is "all in the head" (incidentally an earlier version of her story was called just that).
If you do have a response, click here http://www.thevillagenews.com/contact.php
and tick the box for "A letter for the Editor"
and type or copy & paste your letter.
It may help others to get published and we would always want to publish it on our site, so it's never wasted effort.
Best wishes
John
drjohngreensmith@mefreeforall.org
here http://www.mefreeforall.org/2008-Jul-Sep.1017.0.html#c3717
and
here http://www.mefreeforall.org/2008-Jul-Sep.1017.0.html#c3716
in response to an article about Hypocondria, which drags in a mention of Chronic Fatigue Syndrome and, by doing so -- even if only by implication -- suggests that it is not of physiological but psychatric origin.
Full story here http://tinyurl.com/667wrk
If we do not respond to stories like these it may be thought that we agree, or are at least acquiescent about the view that it is "all in the head" (incidentally an earlier version of her story was called just that).
If you do have a response, click here http://www.thevillagenews.com/contact.php
and tick the box for "A letter for the Editor"
and type or copy & paste your letter.
It may help others to get published and we would always want to publish it on our site, so it's never wasted effort.
Best wishes
John
drjohngreensmith@mefreeforall.org
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