ME AND OPHELIA
Tuesday, July 29, 2003
National Center for Infectious Diseases, Division of Viral and Rickettsial Diseases
Report: Utility of the blood for gene expression profiling and biomarker discovery in chronic fatigue syndrome
By Suzanne D Vernon, Elizabeth R Unger, Irina M Dimulescu, Mangalathu Rajeevan and William C Reeves.
Thursday, July 24, 2003
MRC CFS/ME RESEARCH ADVISORY GROUP
CFS/ME Research Strategy Final Report May 2003
Conclusions and Recommendations
175. The MRC CFS/ME Research Advisory Group considers that studies investigating potential causal pathways and mechanisms, whilst having merit, may not have the same immediate impact on increasing understanding of CFS/ME, nor reducing the suffering of patients. This view reflects the probable multiplicity of causal factors and the widely disparate findings so far reported. It is not that such studies should not be undertaken, but is recognition of the potential dangers of avoidable delays in understanding symptoms and finding novel treatments whilst aetiological studies are in progress. The MRC CFS/ME Research Advisory Group acknowledges the contrary views of some respondents to this recommendation, but considers there to be many other examples across medical research to justify this approach.
________________________________________________________
Following on from my post of 14 July 2003, I have extracted the above paragraph from the Conclusions and Recommendations section of the Medical Research Councils CFS/ME Research Strategy Final Report, produced by the MRC CFS/ME Research Advisory Group in March 2003 and given final approval by the MRC in May 2003.
Whilst pondering on its meaning (in plain English) I received two telephone calls this week which, roughly speaking, went something like this:-
Caller:
Are you doing anything next Sunday? I am calling to ask you if you would like to join us for lunch next Sunday. It would only be for a few hours. Hope you can come. I will pick you up and drive you back home again.
Me:
Oh, thank you, that sounds great. It would be lovely. I would love to come but sorry I cannot. I am too ill.
Caller:
Oh come on. I am calling a week ahead in order to give you plenty of time. You would not have to do anything. All you have to do is say yes. It would only be for a few hours, and you will be home again.
Me:
I would love to come but sorry I am too ill to go out. I cannot make it but thanks for thinking of me and for the invitation.
Caller:
You CANNOT lock yourself away like this!
Me:
You do not seem to understand. I am too ill to go out. The last time I went out was to the dentist and optician in February and March, nearly six months ago. I am housebound.
Caller:
Yeah, sure, I understand. If you will not come, or do not want to come, that is OK, I shall understand.
Me: [getting stressed]
No you do not understand! You make it sound like I have a choice! I do want to be with you all but I am too ill to go out. Either you do not understand or you do not believe me!
Caller: [raised voice]
I do understand! It would only be for a few hours. You have GOT to get out.
Me: [wailing like a 5-year-old banshee in a tantrum]
No you do not understand! No matter how much I explain, over and over, day in, day out, year after year, you just do not understand!
[Bad night knowing that the caller was upset too]
Next day:
2nd Caller:
What DO YOU MEAN you are NOT coming out with us on Sunday! You have got to go. Oh, go on. It would be great for us all to be together. If you do not come then, when can we all be together again?
Me:
I know. I would love to. You know I would go if I could. But I am sorry that I cannot make it. I am just too ill.
2nd Caller:
Oh come on. You will be driven by car from door to door. Go on. It would only be for a few hours.
Me:
Do you think that I do not want to go out? I would love to get out anywhere but I am just too ill to manage it.
2nd Caller:
Yes, but, you must try. If you do not try, you will not know if you can do it or not. It would only be for a few hours.
Me:
You do not understand. I cannot sit up for two hours.
2nd Caller:
Do not say that we do not understand! OF COURSE we understand. We just thought that given enough advance warning, you could pace yourself and get out for a few hours. You did manage it last time.
Me:
Yes, I know, but that was nearly six months ago. For three months afterwards I suffered so badly, life did not feel worth living. Seem to be getting worse. Have trouble sitting up or being vertical for more than ten minutes.
[Silence. Momentary pause]
Me:
Even if I was pushed in a wheelchair, I could not sit up in it for more than ten minutes.
2nd Caller:
You cannot be like this for the rest of your life! Will you? You will get well again. You must believe that. Do you?
Me:
Not sure. I speak to others with severe ME. They have all been just as ill. Some for ten years or more.
2nd Caller:
But you must keep hope. Something will happen. You will go down and then slowly start to get better. They will find a cure soon.
Me:
Doubt it.
2nd Caller:
Oh, of course, they will. They may even, all of a sudden, overnight, come up with a tablet that will make everything all right.
Me:
I do not think so.
2nd Caller:
Of course they will! Why on earth not?
Me:
They have not even started on the right research yet - and when they do, it will take years, so it may not be in my lifetime.
[Pause. Both upset. Change of subject. End of call.]
The end of another day with severe ME. Approx. 1,297 of them so far.
Perhaps when I am able to read, in full, our government's Medical Research Council's final report on the UK research strategy for ME, it may make me feel more positive that there is hope around the corner? I think not. I am feeling too rough to take it all in right now. Cannot stand up at the moment without feeling dizzy and being sick. It has taken me all week to complete this post.
Wednesday, July 16, 2003
How to get rid of grey text box called Messenger Service
I signed in to Dell Customer Service, did a search in the Community Forum, and found five different ways to get rid of Messenger Service popups.
I followed a mix of Options 1 and 2 and, so far, have no Messenger Service popups from Susanne Girl et al.
Option 1
From the start menu, select Run
Type in *services.msc* (without the stars)
In the list of services that come up, find Messenger
Double click on Messenger and change start-up type to disabled and click Apply
Note: instead of double clicking on Messenger I did one right click and went to Properties as in Option 2 below
Then click on the STOP button and OK your way out.
No more Messenger popups.
Option 2
Go to Control Panel
Go to administrative Tools
Go to Services
Find Messenger, right click, and go to Properties
Set the Startup Type to Disabled with the drop down menu
That should stop those messages you keep getting.
Option 3
Facility at SpybotSD (it is free) gets rid of grey text box called Messenger Service.
Option 4
Grey text box called Messenger Service is a type of spam called sypware
It gets in to messenger port in XP
To get rid of the popups go to lavasoftusa.com
Then get yourself behind a firewall.
Option 5
Activate Window XP's built in Firewall
Go to start-> Help and follow procedure
Monday, July 14, 2003
Test May Take Mystery Out of Chronic Fatigue Syndrome
Report: Gene Is Linked To Condition
According to a report by Dr Larry Katzenstein, in Smithsonian magazine last December, the USA Centers for Disease Control and Prevention has found a gene that is linked to CFS and a simple blood test may be available in the next few years to detect it.
Meanwhile here in Britain, despite pleas to the government's Medical Research Council (MRC) from patients begging for urgent research into the physical causes of ME, the MRC still went ahead and awarded 2.6 millions of taxpayer's money to psychiatrists to conduct further research into Cognitive Behaviour Therapy (CBT) and Graded Exercise Therapy (GET).
Thousands of severely affected ME patients in Britain have battled for years against these useless and expensive and damaging psychological therapies.
More on this subject at a later date.
Saturday, July 12, 2003
I first met Iris Niedra in Las Vegas in the early 70s when Howard Hughes was living at the Desert Inn, Elvis was in town and not a lot had changed since Bugsy Siegal's day.
Iris was a big influence on my life because it was through her that I became a theatrical agent residing in Las Vegas for over ten years.
Iris was a very special person and a good friend, naturally cheerful, very warmhearted, kind, considerate and thoughtful and very generous with her time, money and conversation.
We were the best of friends, had many laughs and great times together, and both adored animals. When we first shared an apartment, Iris took in a starving stray dog that she named Mayday, I adopted Mayday's puppy and named him Wally.
My last stay with Iris in Las Vegas was in 1993 on a visit from England. For many reasons (not excuses) I did not keep in contact with Iris after I returned home to England and resettled in the west country.
We were as close as sisters, so I had never forgotten Iris and thought of her often.
Since October 1999 I have been stricken with a severe form of myalgic encephalomyelitis, also known as ME or chronic fatigue syndrome, rendering me horizontal 23.5 hours a day.
Four weeks ago, when my first home computer arrived, a fab new laptop weighing half of Ophelia (my wonderful 3kg cat), I immediately searched the internet to see if Iris was still living in Las Vegas.
I wanted to invite her over here to England for a long holiday by the seaside: a fabulous location, 50 yards from the beach, where I moved to in December 2000 hoping that the sea air would aid my recovery.
Sadly, this is what I found in the Las Vegas Sun newspaper dated October 09 1996.
LV woman enjoyed long career as bunny
Former Playboy, Strip waitress Niedra dies
By Ed Koch
Las Vegas Sun
For many years Iris Niedra squeezed her buxom frame into a shell-like Playboy bunny outfit, fluffed up her white cottontail and went to work in Hugh Hefner's posh clubs from coast to coast.
An original cocktail waitress/bunny at the Miami Playboy Club, Niedra enjoyed the work despite long hours manoeuvring in the uncomfortable costume and strolling around in tight spike heels.
"You wouldn't do a job like that for more than 10 years if you didn't like it," said her mom, Eva Bergman of Outing, Minnesota. "She liked being a bunny."
Still, for comfort sake, there is little doubt Latvia-born Niedra preferred the harem costume she wore during the 1980's and early '90's, serving cocktails at the Aladdin hotel-casino.
Iris Niedra, who never married but dated such interesting men as late comedian Lenny Bruce, died of cancer Thursday at Nathan Adelson Hospice. She was 56.
A memorial service for the 16-year Las Vegas resident will be 7 tonight at Nathan Adelson Hospice. American Cremation and Burial Services handled the arrangements.
Niedra, a stunnng 5-foot-8-inch blonde with one hazel eye and one blue eye, was known for her impeccable taste in clothing, Fetsch said.
Iris was not flashy, but classy," said Niedra's sister, Anita Fetsch of Mankato, Minn. "She had good taste."
But few people knew that Niedra also was a woman of great generosity.
"She gave a lot of money to street people," Fetsch said. "Iris also loved animals and took in many stray dogs and cats and cared for them."
As cancer spread from her lungs, Niedra, a long-time smoker, became reclusive. Her mother was at her bedside when she died.
"Although she did not marry, my sister had a long-term relationship in Las Vegas and many interesting relationships in her lifetime," Fetsch said. "Iris met Lenny Bruce in Haiti and they had quite a time."
"She once brought a Los Angeles gangster home to meet the family. He was an Italian guy and was quite nice."
On a tour of England as a representative for the Playboy clubs, Niedra met a young Michael Caine, whose acting career was yet to blossom.
"He was one of the contestants in a win-a-date-with-a-bunny contest," Fetsch said. "He won, but I don't know if he got a date with my sister or one of the other bunnies. I have a picture of the two of them together, somewhere."
In the early 1940's, shortly after the Soviets took over the Baltic states of Estonia, Latvia and Lithuania, Eva left her husband, Zigurd, and escaped with Iris to Germany. Shortly after that, they fled Hitler's regime to European camps for displaced persons before migrating to the United States in 1951.
It was not until the recent fall of the Soviet Union that Eva and Iris were able to make contact with Zigurd, who still resides in the old country.
"Making contact with her father gave Iris much fulfilment," Fetsch said, noting that she began to show signs of her fatal illness shortly after that.
Niedra left Minnesota in her late teens after serving a stewardess apprenticeship with Trans World Airlines to attend modelling school in Miami.
Because of the spotty nature of modelling work, she applied for a cocktail waitress job at the yet-to-open Miami Playboy Club and was among the first Bunnies hired there.
"It was a fun job and the tips were great," Fetsch said. "You have to remember, there were not a lot of lucrative job back then for young women."
At the height of her career, Niedra, whose measurements were 37-23-37, declined requests to pose nude in Playboy magazine.
Niedra worked for several Playboy clubs, including those in Lake Geneva, Wis., and in Hollywood where she met many celebrities who frequented the establishment.
When Playboy Enterprises closed the clubs several years ago, Niedra did not show signs of being too unhappy about it.
"It was a change of the times, and she accepted it," Bergman said.
In addition to her mother, father and sister, Niedra is survived by a brother, Ivar Niedra of Outing, Minn.; three nieces, Jenny Fetsch, Rachel Rings and Sara Hirshfeld, all of Mankato; and two grandnephews, Christopher Fetsch and Hunter Rings, both of Mankato.
DONATIONS: In Niedra's memory to Nathan Adelson Hospice.
+ + +
God bless you dear Iris and rest in peace.
This weblog is dedicated to the memory Iris Niedra.
With love from Ingrid and Ophelia + + +
Wednesday, July 09, 2003
Since October 1999, I have been chronically ill with a severe form of myalgic encephalomyelitis, also known as ME or chronic fatigue syndrome.
Here I communicate with my friends, ME comrades and online pals - people of all ages, from all walks of life.
Sharing news in general and of my life with Ophelia and ME, good food and household management, home user technology and business services and how all these things impact on my 'lifestyle management programme'.
I am the same age as our Prime Minister Tony Blair (a good example of a 50-year-old these days, still full of ambition and vitality!) and my many interests include Arts and Crafts antiques, modern studio pottery, cookery and collecting simple recipes for fresh organic produce.
OPHELIA is my wonderful British Blue/Burmese/Ginger Brindle Tortie (a moggie in vet speak) with big ears, short legs, golden eyes and fur as soft as mink.
ME AND OPHELIA are constant companions living side by side in this new adventure onto the Internet and charting the road to recovery.
Any friendly feedback, tips or comments would be gratefully received.
Love from Ingrid x and Ophelia x
Myalgic Encephalomyelitis - ME (aka CFS or Chronic Fatigue Immune Dysfunction Sydrome)
Evidenced by muscle pain, with inflammation of the brain and spinal cord, ME has been known for half a century as a-typical polio. The symptoms of extreme lassitude, and the swift onset of exhaustion that characterise the disease, also caused it to be known for many years as chronic fatigue syndrome or CFS. It was only classified by the World Health Organisation of the United Nations as a neurological disorder in 1969.
The disorder is triggered by a virus infection that occurs worldwide in epidemic and pandemic form: seasonally and in selected geographical areas. It affects about 1% of the British population and there is no known cure. While three-quarters of those who become infected do not present advanced symptoms, 25% of ME sufferers are chronically affected with severe illness and pain, causing them to become profoundly disabled and very largely housebound. The condition can last throughout life without remission of any kind.
Doctors and sufferers generally agree that the worst effects of the disease can be ".............managed by strict adherence to conservation of energy, reduction of stress and simplification of work: augmented by education, with practical and economic support".
ME AND OPHELIA
This is the personal blog of Ingrid Jones.
I live by the sea in Dorset, England, United Kingdom.
Here on my PowerBook G4 I communicate to my friends.
About things in general and my life with M.E. and cat Ophelia.
Home user technology and business services.
Food and household management.
How it all impacts on my *lifestyle management programme*.
And my battle for more energy.
See Blogger Profile
Additional blogs:
N Korea
Other categories:
ME/CFS/CFIDS
Atom XML feed
Blogroll Me
Archive:
MAIN HOMEPAGE
July 2003
August 2003
September 2003
October 2003
November 2003
December 2003
January 2004
February 2004
March 2004
April 2004
May 2004
June 2004
July 2004
August 2004
September 2004
October 2004
November 2004
December 2004
January 2005
February 2005
March 2005
April 2005
May 2005
June 2005
July 2005
August 2005
September 2005
October 2005
November 2005
December 2005
January 2006
February 2006
March 2006
April 2006
May 2006
British Blogs:
David Stewart - A British Conservative
<
#
?
>
<
#
Scottish Blogs
?
>
Rest of the World:
Bloggers 4 Freedom first person accounts
USA Blogs:
Patrick's Sudan Project on Wikipedia
Stephanie's Daily Vegetable
<
?
ameriBLOGs
#
>
Japan Blogs:
<< ? Japan # >> |
Australia Blogs:
Canada Blogs:
China Blogs:
India Blogs:
Recently Updated Indian Weblogs
Korea Blogs:
Tech Links:
Blog Lists:
Glenn Reynolds Says
-
"I wish I had a cat like Ophelia. Indeed."
Harvard Weblogs - Sites we're hosting
Harvard offsite-hosted weblogs << ? # >>
Food Links:
Art:
People recovering from ME:
People living with ME:
Laura Hillenbrand's Seabiscuit
People who died with CFIDS/ME:
CFIDS/ME Patient Memorial List
Defining ME:
The Definitive Description of ME - Dr A Melvin Ramsay
Overview of ME - CFS Definitions
The 25% ME Group Online Suppport and Info Severe ME Truths and Facts:
Medical Papers by Drs Dowsett, Findley, Ramsay, Richardson
Government, Parliament, MRC UK
Documents from ME Research Group, Dr Spence UK
What is ME? What is CFS?...information for clinicians and lawyers
Practical issues Living with Severe ME - How to care for someone with ME - DLA link
Links to other good ME sites & UK Regional Support Groups
ME Info and Support:
ME Support & Related Illnesses
Co-Cure CFS & Fibromyalgia Info USA
The National CFIDS Foundation USA
ME Rearch:
Centers for Disease Control and Prevention USA
Thank you to Blogger for this weblog - you can start yours for free now at: