Friday, December 31, 2004

80% of Britons say No to New Year night out

The Scotsman says New Year may traditionally be a time for partying and festivities, but a survey released yesterday has shown that eight out of ten people in Britain would rather see in 2005 from the comfort of their homes than with a night on the tiles.

On that note, and this last day of 2004, I would like to wish you all a restful non-celebration and a very quiet Hogmanay. And, as the Scotsman says (I wonder how Google would translate this): Lang may yer lum reek!

Apologies for the messy changes to this blog. While it is under construction, I am gathering together a list of blogs authored by ME/CFS/CFIDS/FMS sufferers. I've googled for some today, listed here below. If any readers know of links suitable for adding to my sidebar, please share in the comments here. Thanks.

On very bad days when I am unable to post, I tend to find myself wanting to surf the sites of other sufferers. Probably to remind myself I am not alone and see if I have missed any tips on how to cope. I keep tabs on any new developments via daily CFS email alerts from Google and I am in touch with members of the 25% ME Group. If there is a breakthrough anywhere in the world, I'd hope to know about it within 24 hours and share any news here.

The blogs listed here below, are translated by Google from Japanese and Chinese. Maybe it's my brain slowing up while writing this but I'm not finding it easy guessing the meaning of the posts. If you click into links within the posts, you will probably find they are already translated into English. As I am not able to post AND read blogs, if readers here do manage to visit the blogs and pick up any useful snippets or news we may not have not heard of over here, please do share in the comments here. Thank you. P.S. Thanks also to everyone who has commented or emailed. Sorry I am slow at responding. I cannot manage it all at once without something else having to give. I am managing this because I have forfeited posting over at Passion of the Present and Sudan Watch.

Risa, a Chronic fatigue syndrome (CFS) patient (Presently, almost all-inclusive Osamu state) authors Be Happy Chronic fatigue syndrome (CFS).

Thanks to Risa for The Osaka University CFS home page (note the page has been automatically translated from Japanese).

Note CFS & FMS blog is automatically translated from Chinese.

Here is a special warm hello to SB Poet and a link to her ME/CFS/FMS post and Critters photoset (I wonder if they all live with SB).

Thanks to SB Poet, who also authors Abide, for FibroHugs Fibromyalgia Support and Awareness and the commonly identified symptoms.

Note, there are 63 symptoms that I haven't studied closely enough to determine the difference between Myalgic Encephalomyelitis and Fibromyalgia.

Monday, December 27, 2004

Barbara Windsor on the Parkinson TV Show December 25, 2004

One of the members of the 25% M.E. Group (of which I am a member) sent me and some other M.E. sufferers the following email. At the end of this post is a copy of my response. If others wish to email ITV1, please feel free.

Hi all, Sending this as a round robin even though it is a busy time just on the offchance that some of you might have the time and energy to write in as the more who do the better even if it is just a brief comment - it is awful to get such adverse publicity for ME at peak viewing time.

Barbara Windsor, on Parkinson, ITV1, Christmas night, said that Epstein-Barr, (what most people call glandular fever), is 'a bit of a pull yourself together illness ... ... just like M.E.' and she explained how she ignored advice to rest. I put the fuller text far below.

I sent the following comment to feedback at

You need to put in the time 10.30pm Christmas day and your area. There is also an email address

I always enjoy Parkinson but was utterly dismayed at Barbara Windsor's comment saying that ME is one of those 'Pull yourselves together' illnesses, and would be improved by exercise.

I trust you will correct this inaccurate and potentially very harmful advice. Unfortunately many fatigue illnesses are lumped together and confused with ME and while exercise can help people who are fatigued through eg depression, those suffering from the neurological illness ME run a grave risk of being harmed by pushing themselves to exercise.

The 25% ME group (representing the 25% of ME sufferers who are severely affected and house or bedbound), did a survey of members and 82% of those who had tried it had been harmed by 'graded exercise'. Ambulant patients have become bedbound after trying it.

I trust you will correct this misinformation and also inform Barbara Windsor as well as I am sure she would be horrified to realise that her comment could have such a devastating effect on people's lives.

It is not just the appalling potential physical harm, but this attitude causes untold mental suffering too when friends and relatives watching the programme assume that an ME sufferer is ill simply because they will not pull themselves together and blame them for their illness. Imagine if this were said to MS, AIDS or cancer patients!

Furthermore this portrayal of ME sufferers gives ME adverse publicity and has a detrimental effect on fundraising for research into physical causes, diagnostic test and a cure for ME, and this is seriously underfunded as it is. The government has so far given all the research funding to psychiatrists to find a way to manage the illness, but nothing to physical researchers to find a cure.

Barbara Windsor mentioned being depressed, but although some ME sufferers are depressed as indeed are some sufferers of other chronic illnesses like MS, AIDS or cancer, very many ME sufferers are not at all depressed and take a positive approach to life.

As an ME sufferer, bedbound for 8 years, I would like to point out that several times after bouts of post viral fatigue syndrome I did struggle into work before I was fit as I so loved my job teaching blind students and it was hard to find an equally specialised replacement when I was off sick. However it finally became ME and for the last 8 years I have been unable to sit up in a wheelchair, but I have never been depressed, and am always hopeful that I will improve one day.

Excerpt from Barbara Windsor interview on Parkinson Dec 25th

Michael: You're not doing panto this year because you've been poorly, haven't you?

Barbara: Yes, I have. I was poorly for about eighteen months. It's a silly illness called Epstein Barr. It's like ME. It's one of those, pull yourself together illnesses, a little bit like that. I was over doing it and it was a warning. We were gonna take a year of Eastenders and I was gonna do pantomime and I had a taxi accident. I wasn't feeling good, and I had this taxi accident. And one day I went to get out of bed and I just collapsed because you get paralysed in the legs and you get all sorts of symptoms and the worse thing is the depression. And I've never had depression, you know.

Michael: No, you don't strike me as the type who would get depressed.

Barbara: It's awful and you pray at night and you say, please God, I don't want to be a nuisance. And also being married to Scott who's so much younger. Obviously when we got together I went through a load of old sh*t with the papers, saying she should be thinking of getting a good night's sleep. (Laughter) Well, maybe he might want a good night's sleep! (Laughter) And all things like that. And she hasn't thought about when he'll be wheeling her around in a wheelchair. And suddenly I thought, ah, this is going to happen. Because I broke my ankle at the same time. So, I was in the wheelchair. And I remember thinking, please God, I've got a great old man and please don't let me wake up in the morning because I don't want to be a nuisance to my Scott, I've had a wonderful life. And I really used to say all that. And the the next
morning when I woke up I'd say, thanks very much, and have a right ruck with God. (Laughter) But when I broke my ankle it made me think less about the Epstein Barr. Because the specialist, I said, how long is this going to go on for? And he said, as long as it takes. And I said, aren't there any vitamins, any antibiotics. And he said, no you just go home to bed. And I said for how long? And he said, for as long as it takes. But when I broke the ankle, I started to get up and do things, I forgot what he'd said.

Michael: And at the age of sixty seven you've done a keep fit video. Did that come out of that?

Barbara: Well sort of. I got a phone call from the video people who said, you look absolutely marvellous, you're a very good role model for the older lady. And I thought, yeah, me and Joan Collins. But I said, well I might look OK, because I put on a front, that's very me, the show must go on. But I don't feel good because I've laid in bed for nine months so everything feels creaky. So I said, if you can find someone to work out in the home, I don't want to go anywhere. So they found me this fantastic little guy, Roy Gayle, he was great little black guy.

Michael: And it's aimed at the sixties upwards? And you do it in your home?

Full transcript available at:
- - -

Here is a copy of the email I sent to the feedback section at ITV1:

I was shocked to hear that Barbara Windsor had referred to Myalgic Encephalomyelitis (M.E.) as "a bit of a pull yourself together illness".

For the past five years I have suffered dreadfully with M.E. which is getting progressively worse. I have lost my mobility and am horizontal 23.5 hours a day 24/7 and have not been out for the past two years. I am too ill to sit up or stand longer than ten minutes.

I feel hurt that someone in the public eye - and in front of millions of viewers - was so dismissive over such a devastating neurological disease as M.E.

Those of us who suffer - as much as those with severe Multiple Sclerosis (M.S.) - are usually invisible to the general public. Tens of thousands of us are too ill to even be out in wheelchairs. Some are so badly affected they have to live in darkened rooms and be fed through a nose tube. It is not a well known fact that a quarter of all M.E. sufferers are severely affected and suffer long term chronic illness and profound disability.

Only fellow sufferers or those who care for us know the incredible battles we face just to get through the basics of feeding and personal care each day.

It's been said the quality of life for those who are severely affected by M.E. is the same as those suffering from end-stage AIDS and that the daily suffering is the equivalent of AIDS patients in the last two weeks of life.

Here's requesting that Michael Parkinson and Barbara Windsor, and the management responsible for the show, please do everything within their power to correct the grossly unfair (and damaging) misinformation they are responsible for broadcasting to millions of TV viewers in Britain.

Ms Windsor is lucky she did not find herself among the ranks of quarter of a million other severely affected M.E. sufferers in the UK. Had she done so, and heard someone on prime time television implying that one can get well from M.E. by pulling yourself together and excercising, she might have wanted to do us a service by promoting the desperate need for funding and research into the this illness, that I can only describe as a living death, for which there is no treatment or cure.

Anything ITV1 can do to help limit the damage done by the the Michael Parkinson Show would be gratefully received by tens of thousands of fans of the programme who also happen to be M.E. sufferers and their carers, families, friends, doctors and health care professionals. Thank you.

Saturday, December 25, 2004

A Christmas Hello! and banging heart by abide


Christmas greetings, the above Christmas hello is especially for visitors here today. The image jpg is titled "Pere Noel" which I guess is French for Father Christmas. I found it at Netlex in France yesterday and thought it was kindly, warm, cuddly and cheery looking. It sure would be great if he was real. Imagine if there was a person so full of love and peace and goodwill who visited everyone on the planet each December 25. Well there is, but we cannot see him in the flesh. This may sound cheesy but he is there for us 24/7 whenever we wish. All we have to do is think hard, and he will appear in our hearts and minds and be there for us to talk and listen.

Here below is a copy of a heartfelt post that I found with great surprise in my links list this morning at Technorati. You've got to love Technorati when it works so efficiently, I know I do: it is like our very own blogphone system. The post is from a beautiful blog called abide that I shall write more about later on. Right now it is 7.56 Christmas Day morning. Ophelia is out on patrol. Fire and table lamps are on. I have just opened some lovely little gifts that friends had mailed me. One contained a bar of Green & Black's organic chocolate almond which I ate half of while opening the others. What a great energy saving gift as that's breakfast taken care of. If only we could live on chocolate, life would be so much easier. Here is the post (btw if the colours and fonts keep changing at this blog it is because I am teaching myself how to tweak my template - I have plans to develop this blog. See what I've done over at Sudan Watch (where the template was the same as this) ... all by myself without a clue about HTML and stuff. I realise it's not great, but I am a lot happier with it than the original blogger template.

banging heart

I read Me and Ophelia today with stunned respect -- for the courage of disclosure; for the easing of my own pain, through recognition; through affiliation -- unchosen, to be sure, but there nonetheless.  Her openness has eased my solitude, and I am grateful for that.

She says:

The imprisonment of long term chronic illness and loneliness is getting to me these past few days. I shall be glad when it is all over. Christmas I mean. I think. Although I wouldn't be at all disappointed if I went to sleep and never woke up again. I am always very grateful and appreciative of people's kindness and all the help I am given. But at times it does not seem worth it. Solitary confinement is no kind of life at all. My battle is unknown. There is no treatment or cure. They put animals down for lesser suffering. At least I have Ophelia to keep me company. If only she could speak ...

Following her example, I am posting a late-night ramble written sometime in the past few days (I actually don't remember when.)  But I am putting it below the cut:

awake in the drugged night
asking myself how i have managed
to be so alone. not alone in my bed,
which folds me in fine; but alone
in my life, in the dailiness of it, in
the chores and banalities of living
too long.  alone in my soul.  how
has it happened that a christmas comes
with no invitations, none meant in
friendship or sorrow or guilt, none.

. . . i have done this to myself
. . . what have i done?

it is me, with all this.  it is judgment,
i think.  that, and misunderstandings
that i've no energy to rectify . . .

so now, needing, more than ever in my
life, needing friendship and tangible
support, i do not have it.  i can not, do
not care for myself.  i am unable to tell
what is can't and what is won't.  i have
lost my bearings.  do i mean to be cruel?

am i required to accept cruelty?  am i
unable to distinguish between cruelty
and simple human failings? i do not cry, for
fear of being overheard.

i think i need a room, just
one room, a few necessities, the dogs -- less to
take care of.  even less to care for.

a virtual life does not ease the shoulders.  it
does not mend the heart, banging, banging
against its own shore.

Friday, December 24, 2004

Peace on Earth and goodwill towards all men

God bless you all dear bloggers. Here's wishing you a peaceful Christmas.

"For unto you is born this day in the city of David a Saviour,
which is Christ the Lord;"        (Luke 2,11)

Holy Land, Bethlehem History.



The imprisonment of long term chronic illness and loneliness is getting to me these past few days. I shall be glad when it is all over. Christmas I mean. I think. Although I wouldn't be at all disappointed if I went to sleep and never woke up again. I am always very grateful and appreciative of people's kindness and all the help I am given. But at times it is just does not seem worth it. Solitary confinement is no kind of life at all. My battle is unknown. There is no treatment or cure. They put animals down for lesser suffering. At least I have Ophelia to keep me company. If only she could speak ...


This is the first year I can recall not sending Christmas cards. And the first time I have let Christmas pass me by. I've done everything I can to try and avoid any thoughts of it incase it gets me too down. TV is the biggest reminder. Media really stokes up Christmas in a really crass way. When I watch the TV commericals they sound so loud and grabby - pressuring people into being manic about buying - brainwashing people into thinking much stuff makes for a happy Christmas. Health is the key. With health you have choices. Without health you have few choices and lose your freedom to lead any kind of life.

In the Autumn I made the decision after three of the most awful months of the year (too many home maintenance things going on) when the whole business of organising food became a major problem.

Instead of Christmas, I decided to get a guest room re-decorated. I could not manage to organise both. And decided it's better I achieve something constructive rather than spending three months of energy to organise Christmas and another three months getting over it. There is always something that needs to be done. I am simply not getting enough rest. So I have spent time and thought on ways to streamline day to day life even further.

Each time I introduce something new, I think I'll have this whole M.E. thing cracked -- but no matter what, the illness is always there. But even when I do manage to reduce the pain and other symptoms, it leaves me with a whole range of other problems, ie yearning to go out and knowing if I do, I can't manage when I get back. The suffering is so great for weeks or even months afterwards, it is not worth it - and I believe it is not the way to recover. Like picking at a scab without giving it a chance to heal.

I've not been out since March 2003 and am still horizontal 23.5 hours a day. I think I look awful. Some say I am looking better. But it's all in the eyes. My eyes look like I've not slept a wink in a week. They have lost their sparkle and vitality. They look ill in an invalid/housebound sort of way. Once in a blue moon I get a window of well being - it does not last for long - some times just 24 hours - once it lasted for three weeks - and then they don't look ill anymore. So it's not permanent, if I recover.

Thanks to the help of a friend six weeks ago I have started a whole new food regime that is helping to reduce the symptoms. Also, thanks to cash gifts from my mother last Christmas and birthday, I've had a new dishwasher and an additional 3-drawer freezer installed. Bought them over the phone. The dishwasher is a slimline Hotpoint for 7 place and works really well. The ready made meals are prepared by a wonderful whole food store that uses its own fresh organic produce. My friend goes shopping for a whole range of dishes and brings them on a visit for my new freezer. I just take one out the night before and pop it in a hot oven (the meals are served in foil trays) for 40 minutes on a tray lined with foil (saves on washing up). The meals are substantial. Soon I will be getting the hang of the new regime and preparing side salads and veg etc., for each meal. Cutting down on cooking and managing people to cook has made a huge difference in reducing my symptoms. But as soon as I start something extra, like walking up and down more than usual or sitting on a stool to plant winter bulbs in my garden troughs, the symptoms return with a vengeance. I rest straight away so it doesn't take weeks for the symptoms to reduce.

This past month, I've been all out of sync with fruit and vegetable deliveries. Have not placed any orders and have hardly eaten any fresh greens this past month. In the new year I shall purchase a new fruit and veg juice extractor, bordering on industrial strength this time (my other new one lasted less than six months, juicing carrots did the motor in). More on this after I've browsed the net for some tips on juice extractors to post here. Meanwhile, if any readers can recommend tried and tested juice extractors that ideally take whole or halved fruit (no chopping into small chunks) any pointers would be most appreciated.

I shall try and write more here over the Christmas/New Year - as a diary entry - to look back on this time next year.

The strength to be sociable - holiday cheer is a challenge for chronically ill

Here below is an article I found online. It is by Joanne Kabak, a freelance writer, dated December 21, 2004. I am not sure why I have posted it here. If I was as well as any of the people mentioned in the article, I would consider myself partially recovered. Perhaps I am posting it here because I wish there was the same sort of article for those who are almost or totally incapacitated. Disability is one thing but disabling chronic illness is quite another. I'd rather have both legs chopped off and be fit and healthy in a wheelchair, fighting to walk on false legs and getting involved in all sorts of stuff, anything rather than THIS.

Most of the points in the article are good, but not at all helpful for those who are so severely affected by their condition that just getting through the day - basics of personal care, nutrition and housekeeping - is a herculaen task.

The people mentioned in the article seem able to lead lives with partners, families and work. None of their lives can be compared to this living death. Solitary confinement. Prison. Even criminals don't lead such solitary lives. I'm getting teary eyed so must stop now. Major holidays and celebrations just add to this hellhole of an illness. I know I am not alone in my suffering. I am grateful and appreciative of people's kindness and all the help I get. But sometimes, it is not enough and it is hard working at not moaning and pretending to be cheerful and content. People expect you to be happy. If you are unhappy they call you depressed and tell you to go see a doctor and get a tablet.

How to vent ... when you can't just take a flying leap .... how to scream ... when you know there is no point to screaming ... how to get mad and angry ... how to settle for your lot in life ... acceptance without being defeatist ... being realistic without living in false hope. Of course, I am talking a load of rubbish here. This is a terrible post. But I know how I am feeling right now. This time next year I want to look back on it and see if there have been any changes or improvements.

Here's the article:

For more than three decades, JoAnn Quinn, 55, of Bellmore has lived with lupus, which is characterized by overwhelming fatigue and extreme joint pain.

She doesn't let it keep her from a social life, including having a holiday with all the frills. But at every step of the way, she has to work things out to accommodate her illness. That means leaving the decorations to her husband, serving food that's cooked in advance, and being satisfied with a house that isn't always sparkling.

Sometimes, it also means having a thick skin. Quinn said she's had to brush off glares of passersby at the mall who think she doesn't look sick enough to use handicapped parking. Even harder to deal with is losing friends because, one time too many, she's had to cancel plans at the last minute. "Some people take it personally," Quinn said.

Those who suffer with chronic illnesses may look healthy and have periods when their symptoms barely make a dent in the day's activities. But other times, symptoms flare up without warning. Further, many people have more than one of the approximately 80 disorders identified as chronic, including arthritis, chronic fatigue, diabetes, fibromyalgia, lupus and multiple sclerosis.

In addition to getting appropriate medical treatment, patients have to figure out how to function in the family, get to work and maintain a social life. And those around them have to figure out how to respond.

When it comes to chronic rheumatic illnesses, specialist Dr. Alan Kaell, who practices in Port Jefferson and Smithtown, said, "I only wish I had a magic pill that's risk-free and would cure everyone." But these types of disorders do not go into complete remission with medication, although they're helped significantly.

"Medicine alone," Kaell said, "is necessary but not sufficient for people to live quality productive lives, whether it's recreationally, vocationally, spiritually, socially."

To get more of their life back requires socializing and coping skills. "You don't give up going out with people, but you may have to give up dancing because your knees and your back can't take it," he said. As tough as it is, people with chronic illnesses have to renegotiate with themselves, and those around them, to develop more realistic expectations.

Holidays 'a lightning rod'

Despite the need, "there's no model for how to deal with chronic illness in social terms," said Patricia Fennell, a researcher and clinician specializing in chronic illness. She's also the head of the Albany Health Management Association in Latham, N.Y., an organization that counsels patients and trains professionals. The issues surface particularly this time of year, since "holidays act like a lightning rod where all the physical and social concerns around chronic illness get really highlighted."

Without a new way of looking at things, people feel they have to keep up the traditions, often by fulfilling expectations that may be "crushing and oppressive," said Joan Broderick, assistant professor of psychiatry and behavioral science at Stony Brook University.

For a person with a chronic illness, standing for a couple of hours at the kitchen counter to make butter cookies the way Grandma did may seem out of the question after a day's work. But how to say no when everyone in the family believes the holidays aren't complete without them?

Invitations, too, become more of a dilemma than a chance to have fun. When there are three parties in the next five days - the boss' annual event, the child's school pageant, the mother-in-law's tree-trimming - a person with chronic illness may barely make it through one of them.

Chronic illness is ambiguous, cyclical and long-term, said Fennell, who has identified four phases based on extensive research: crisis, stabilization, resolution and integration. For example, people have different physical and social experiences in the first phase than they do after they've stabilized. Yet, in many cases, people also end up looping back and forth between the phases.

For Kim Snyder, an East Hampton filmmaker who has chronic fatigue syndrome, the crisis hit 10 years ago in her early 30s. During the first 18 months of her illness, she said, "I had no social life." Her contemporaries were on the career and social fast track, and she was housebound and bedridden.

"I felt like I had a horrible flu every single day. I felt gypped socially, professionally," Snyder said. What's more, "there was nothing in my experience to help me understand what to expect."

Adjusting your routine

The way Gina Cifuentes, 33, of Bay Shore, initially handled her diagnosis of rheumatoid arthritis and multiple sclerosis was to be rebellious. "I didn't want to see anyone," she said. But now that three years have passed, she's resumed a social life that centers on her family, including three younger sisters. They keep her laughing, she said, though otherwise her social activities "are not very loud." Former routines, like the once-a-week night out at the bar with her sister and friends, are just not an option.

"Chronic illness forces you to re-adjust a lot. And I mean a lot," said Anne Raybin, 78, who became ill with fibromyalgia in 1968, long before it was even given a name. She can't play tennis or golf anymore, but, she said, "I don't give up on joy." For her that especially means continuing to teach at Stony Brook University beyond her retirement as a social science professor.

Sometimes the questions center not so much on what to do, but what to say. Raybin said she's open with her students about her illness, but she doesn't see a need to go into the details. For example, when she had such severe back pain that she walked into her classroom stooped over and had to have a teaching assistant carry her papers, the students wanted to know what was going on. Rather than identify the disc problems that accompany her illness, she said, "I made a joke about aging."

In her job in retail sales, Cifuentes said she's able to stand for long hours, but lifting heavy objects is a problem. If she has to, she said, now she'll speak up, "so people know what they're dealing with when they're dealing with me."

Be clear about limitations - what you can do, what you can't do, and what you won't do, said Broderick. But it takes practice. "There's a lot of dysfunctional communication around chronic illness," she said.

Avoid suffering in silence

Especially during the holidays, chronically ill people need to cut through the silence and express what really is meaningful to them about the celebrations, and what has to go. It beats plowing ahead stoically - only to have your head fall onto the plate in exhaustion as soon as the special dinner you prepared is served.

For example, Raybin said she's gotten her family to accept the fact that, though she loves to cook, she makes her homemade potato latkes for Hanukkah in advance when she has the energy and freezes them. After initial skepticism, everyone now says they're just as good.

Cifuentes said she could leave all the holiday preparations to her family, but she wants to have her own contribution, too. This year, it's pineapple upside down cake: easy to bake and delicious.

Snyder, the director and producer of an award-winning 2001 documentary on chronic fatigue called "I Remember Me," said that now that her symptoms have abated, she's working long hours again and hosting a dinner. But she plans to ask for a lot of help, and she expects to get it. What tends to happen, she said, is that you "recruit" people into your life who are more nurturing and understanding of what you're going through. The friends who don't get it? They seem to fade away.

Sexuality versus intimacy

For many people, the holidays, like the rest of the year, are not just about public festivities, but also about private moments.

"No one with a chronic illness walks into my office saying 'We're having too much sex,'" said Fennell. Typically, "the spouse wants to know 'When am I going to get my wife back?' "

Symptoms such as pain and fatigue dampen the sex drive, and so do the side effects from medications. Antidepressants may suppress libido, and steroids can cause significant weight gain. It can help a relationship to shift the focus to a different kind of intimacy.

Quinn, who is the executive director of the Long Island/ Queens affiliate of the Lupus Alliance of America, said its education days include discussions on warm baths, massages and other ways to accommodate the illness in intimate situations.

It can even help to change the time of day you are together. For many people, Broderick said, sex at night is out of the question, because a chronically ill person can be totally exhausted by early evening. Mornings may also be a problem since some conditions cause a person to wake up very stiff and achy. So why not try three o'clock in the afternoon?

Even though there are medical changes that aren't within the control of the person, "virtually any problem that a person with a chronic illness faces can either be overcome or more successfully coped with. Sexuality, intimacy is one of them," said Robert H. Phillips of the Center for Coping in Hicksville and the author of 30 books on coping.

In the end, "all we want to do is feel normal," said Paula Goldstein, 59, who has lupus and is a social worker from Mineola. However, no matter how much people try to make life hum along, there still are times when the effects of the illness stop them in their tracks.

Goldstein describes herself as a positive person, but she was anything but positive the day she had to miss her daughter's induction into Phi Beta Kappa at Union College in Schenectady because she was too ill to lift her head off the pillow. "I cried a lot," she said.

Yet, those times are the exceptions. Like most people with chronic illness, she recognizes that "I can't do what I used to." But Goldstein added, "I do what I can."

Party tips for sufferers

Patricia Fennell is the author of "The Chronic Illness Workbook: Strategies and Solutions for Taking Back Your Life," (New Harbinger, $16.95) and a behavioral consultant to the U.S. Centers for Disease Control and Prevention on chronic health care guidelines. Given the epidemic proportions of chronic illness, she said, if you're having a holiday gathering, it's very likely there'll be someone at the party who is living with one of the disorders. There are gracious ways to raise the concerns. Her suggestions:

For the host

How to say it: "I know you've been coping with an illness. I'd love to have you come. Is there anything I can do to make your visit more comfortable?"

Food: You don't need to make a whole separate dinner for guests who are ill, but you can ask if there's a particular food or two to have on hand in case there are dietary restrictions that would make them unable to eat anything you'd normally serve.

Physical comfort: Standing for a long period of time is often difficult. Offer seating, or an opportunity to lie down in another part of the house.

Personal needs: Someone with a chronic illness needs to know where the bathroom is and how far it is to get there.

For the guest

It's up to you to decide how much you want to disclose about your condition. But it's only fair to share enough information so your host knows your parameters if they affect your experience at the gathering. And it builds in a cushion in case you're having a bad day.

Accepting the invitation: Let the host know "I won't be able stay too long," so if you have to leave early, you don't create hard feelings or get into an unnecessary exchange where the host tries to persuade you to stay. It also helps to say, "Given my limitations, I may not be able to make it at all." Warning the host lifts the pressure off you. If it turns out you're really not well enough to attend, even if it's at the last minute, you'll be less likely to force yourself to go. Pain and fatigue is enough to endure. You don't need to pile guilt and disappointment on top of it.

Monday, December 20, 2004

MS damage repair mechanism found

Good news for MS sufferers via a BBC report out today. I am copying it here in full for future reference. One day, when there is a breakthrough for ME, I imagine it to be something like this.

MS is an inflammatory disease which causes a range of symptoms from fatigue and numbness to difficulties with movement, speech and memory. The symptoms sound so like severe ME it's hard to understand why the two conditions do not fall under the same research umbrella.

It is not uncommon for MS to be misdiagnosed as ME. The one difference I know of is the numbness experienced by MS sufferers stays fixed in one place whereas with ME muscle and joint pains flare up in different parts of the body, and with rest disappear and with activity reappear and move around the body much like Rhematoid Arthiritis flare ups.

I can guess where my flare ups will occur if I have over exerted outside of my baseline (which is still 10-15 minutes). If the name severe Myalgic Encephalomyelitis had the words Orthostatic Intolerance added, it would explain this condition much better. It's not like paralytic polio where one can't move, it's more like the body when upright screams out it will collapse if it is not horizontal.

The warnings of collapse are what I imagine a diabetic crash might feel like, a feeling of going into shock and collapse if it doesn't get insulin. After ten minutes of standing my whole body, innards and brain feel like a jumbled jangle of nerve endings on fire screaming to get horizontal. Stress will have this effect too and make all of my muscles burn.

If I continue standing or walking or even sitting up without being propped up my brain becomes inflamed, throat gets sore and concentration slows it feels like being in a drunken stupour. Intellect is not impaired though, just the speed of thought which affects ability to complete tasks/conversation. The ability to respond and communicate while being on the verge of collapse feels like trying to have a conversation while drowning, impossible while brain and body go into screaming for survival mode. With rest it improves again. With any activity it deteriorates again. They say it is the immune system attacking itself. It sure feels like something is attacking and poisoning the muscles and brain. Here is the report.

MS damage repair mechanism found

Scientists have identified a gene which controls the body's ability to repair the nerve damage inflicted by diseases like multiple sclerosis.

MS strips nerves of a protective fatty sheath called myelin, impairing their ability to transmit signals.

Researchers at Cambridge and Harvard Universities have discovered a gene called Olig 1 can stimulate the re-growth of myelin.

It is hoped the Science study may eventually lead to new treatments.

This finding is an encouraging scientific step along a road which will hopefully lead to therapies 

MS is an inflammatory disease which causes a range of symptoms from fatigue and numbness to difficulties with movement, speech and memory.

The relapsing-remitting form of the disease follows a characteristic pattern of periods of deterioration followed by partial recovery.

During remissions, damaged nerves in the brain and spinal cord become recovered with myelin.

The latest research has shown that Olig 1, previously thought to aid the development of certain brain cells, jump-starts this process.

A close cousin of the gene, Olig 2, was thought to play a key role in the production of myelin-producing cells called oligodendrocytes during the development of the foetus.

However, the role of Olig 1 has been less clear.

Antibody clues

The researchers examined the role of both genes by using antibodies to highlight the location within brain cells of embryonic and adult mice of the proteins that Olig 1 and 2 produce.

In embryonic cells proteins produced by both genes were found in the cells' central powerhouse, the nucleus, suggesting a key role for both genes in the production of myelin-producing cells.

However, in adult cells, Olig 1 had migrated to the cytoplasm outside the nucleus, where there are no genes to regulate.

But when the scentists looked at adult cells from rodents with MS-type symptoms they found Olig 1 was back in the nucleus.

Effectively, the damaged cells had reverted to a foetal state in which Olig 1 was back at the centre of the action, and apparenty able to oversee renewed production of oligodendrocytes.

The researchers found that mice bred without Olig 1 were unable to repair demyelinated cells.

Human samples

They went on to examine the localtion of Olig 1 in samples taken from human MS patients.

In healthy areas of the brain the gene appeared inactive, but it was active in damaged regions.

Researcher Dr Robin Franklin said: "This suggests that the Olig 1's function has been shaped by evolution to repair the brain in areas where the insulating layer of myelin has been depleted through disease."

While the cycle of damage and repair can go on for many years in MS patients, eventually the system wears down, and in most people the disease progresses with fewer remissions.

Dr Charles Stiles, from Harvard's Dana-Farber Institute, said: "Perhaps the signal that calls Olig 1 into service becomes weaker.

"Although this finding will not yield direct results in terms of finding treatment for MS we are confident that it gives new insight and direction for research."

Mike O'Donovan, chief executive of the Multiple Sclerosis Society, said: "There is increasing optimism that a way can be found of repairing the damage caused in MS.

"A great deal of research effort, including work we fund, is now being focused on it.

"This finding is an encouraging scientific step along a road which will hopefully lead to therapies."

Chris Jones, chief executive of the MS Trust, agreed that the study was a significant step forward.

"This will bring us a step closer to appreciating the remyelination process and the reasons why there is a failure to repair myelin in people with MS.

"It's early days, but the signs are positive."

Christine Purdy, of the MS International Federation, said: "For people with MS, the work gives great hope that this will contribute significantly to the much-desired therapeutic breakthroughs."