Monday, December 28, 2009

It's Pantomime Day

Today we are going to the Pantomime at the Leas Cliff Hall. They are putting Cinderella on this year. I shall probably stay home to look after Teresa Jayne and join the family for Tea after the show.

I felt very unwell yesterday and fell asleep early, so I have woken up at 3am, but feel sure I will go back to sleep very soon. I'm really looking forward to Wendy's excitement. She loved the Tiger who came to Tea at the Leas Cliff Hall and she talked about it for months afterwards.

Sunday, December 27, 2009

Christmas 2009

Christmas was lovely. Wendy was very good. She was allowed to open some of her presents and her Stocking, but after that she had to wait until after lunch, and its a very loooong time when you are only 3.

Wendy, trying to be good:
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Everyone helped, either with provisions, preparing food or cleaning up afterwards and that was a huge and much appreciated help. I didn't really do very much. Christmas was on Friday, and the defining characteristic of ME is Post Exertional Malaise. I was fine this morning but this afternoon feel so unwell I have had to go back to bed, and this post will be brief because of that.

We are all due to go to see the pantomime Cinderella tomorrow afternoon. The biggest fun for everyone will be watching Wendy's reaction. I hope I will be well enough to go, but I doubt it.

I got some lovely photos. Here are a few :

Early Morning
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Teresa Jayne wanting to walk
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Brakkie keeping out of the way under a table
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Richard assembling Wendy's scooter
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Josie having a good time
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As is Sean
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Caelyn and Nigel sharing a joke
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Teresa Jayne enjoyed herself very much
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Teresa Jayne looking adorable
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Last but not least, Michelle and Richard
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The rest of them can be seen HERE

Thursday, December 24, 2009

Why do my Descendants ....

Why do my descendants always pick on Sean? Here is Wendy giving him a good tickling :
Wendy,Sean

Wendy,Sean

Wendy,Sean

Then Caely gets stuck in
Sean,Caelyn

Sean,Caelyn

Caelyn

Oh Woe! It looks like Teresa Jayne is preparing to follow in the family footsteps.
Poor Sean! You could almost feel sorry for him ;-))

Teresa Jayne,Sean

Good to be Indoors

When weather is as it is, it feels great to be cosy indoors.

Anselm and Brakkie
Anselm,Brakkie

Sean feeding Brakkie some ham
Brakkie,Sean

Sean opening his Christmas cards with great pleasure
Sean

Sean enjoying his Horlicks
Sean,Brakkie

Sean loves the way Brakkie's coat blends in with the sofa
Brakkie

It was a completely ordinary evening. No special food, no special anything. Therein lies the wonder - that something so ordinary can be so warm, joyful, contented, companionable, homely and relaxed. We simply enjoyed being together. We do special things sometimes but mostly we enjoy domesticity. Our 'ordinary' was not even to be dreamed before we met each other. What we have now after all the healing love has given is something we could not even have imagined in those sad empty years we had before knowing each other. And as my family can verify, I have a pretty good imagination, but this was way beyond it's bounds. This confident, quiet security in someone's benevolence and love is extraordinary, considering our relationship histories. What we have now is a priceless and unmerited gift and we are profoundly grateful for it, and we never take it for granted.

Wednesday, December 23, 2009

Snow in Tonbridge

I went to Tonbridge yesterday. The train journey was, much to my surprise, OK, although they were operating a Saturday service. It had been snowing for days, and the ice was packed hard and slippery on the pavements. Sean's housekeeper, Stella, slipped on the ice and fractured her wrist. I was pretty cautious on the Beast. Here are a few pics :

The thick ice on the pavement
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St Stephen's Church at the bottom of Quarry Hill
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The Drive. Its very steep, but the Beast managed it.
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Another one of The Drive
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Sean's back garden where we had a lovely barbecue in July. If you want to remind yourself of this year's heatwave, look here
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Well, as you can see, it was cold, slippery and gloomy. Sean and Anselm walked quite a distance to Sainsburys to get the food in, and they walked because they didn't dare take the car out in those conditions.
Anselm,Sean Brakkie

Anselm,Sean

I'm glad Anselm went with Sean in case he slipped. They had a companionable walk and they shared the shopping bags so that neither was overburdened. Anselm has been very sweet to Sean, who has enjoyed having him to stay during the holidays.

Happy Christmas Everyone!

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I've been in such a muddle that I haven't done any Christmas Cards at all. I feel guilty, and I'm sorry. I truly wish that all the friends and family have a good Christmas.

I haven't even wrapped one single present. The flat needs cleaning. There is a mountain of laundry and the fruit cake needs a good drink of brandy. I'm trying to pull myself together, but it feels like I'm in some sort of daze. Should I go to sleep now and tackle it in the morning? I'm not very good in the mornings. But there again, I'm tired now. Just looked at the clock, and that has decided it. I'm going to sleep.

Maybe Santa will send some elves to help me. I can only hope!!

Tuesday, December 22, 2009

Josie's Computer

All that shows on my Mum's computer screen is "System Failure".
It isn't doing anything else. She will have it looked at after Christmas, but in the meantime, she can't read her emails or check her Facebook account.

Sunday, December 20, 2009

Mum's friend Carrie

My mum and Carrie have been friends for years. Carrie is visiting England to have Christmas with her son and his wife. She is staying with my mum for a week, and I'm sure they have a lot to talk about.

Here they are:

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Wendy's First Official School Photo

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And here is our Teresa Jayne. She's much better, as you can see. Messy face, but a beautiful smile.

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The Present

There I see you,
my king and my God,
laying there in the manger,
newly come into the world
with all the bright promise
of that wonderful gift.
What gift have I to bring
to lay at your feet
in joyful offering
for this wonderous moment?

I give you my heart,
torn and touched with sin,
my hands, too often used to hurt
as well as help,
my mouth to sing your praise,
even as it says that which causes pain.

It is not much, I know,
to give to you who hold the universe
in your hands,
but like the widow's mite
I lay it at your feet,
all that I have to give.

In your hands, Lord,
may it become transformed
into something that will please you.

Susan E. Stone, 2003

On the Way to Bethlehem

Dusty was the road that day,
dust and rock and winter sun
where the small young women went
large with child and tired and bent,
down the road with her husband
on the way to Bethlehem.

Others passed them by as they went,
dust and rock and winter sun,
Unknowing of the wonder there,
beneath her heart a thing so rare
going down the road with her husband
on the way to Bethlehem.

She carried an amazing thing
dust and rock and winter sun,
A mystery unfelt, unseen,
by those who passed her travelling
going down the road with her husband
on the way to Bethlehem.

She gave a yes that shook the world,
dust and rock and winter sun
yet others noticed not a thing,
how a poor girl carried the whole world's king
going down the road with her husband
on the way to Bethlehem.

Susan E Stone, 2006

Friday, December 18, 2009

The Journey of the Magi

This poem was written by TS Eliot, and I think it is moving.

"A cold coming we had of it,
Just the worst time of the year
For a journey, and such a long journey:
The was deep and the weather sharp,
The very dead of winter."
And the camels galled, sore-footed, refractory,
Lying down in the melting snow.
There were times we regretted
The summer palaces on slopes, the terraces,
And the silken girls bringing sherbet.
Then the camel men cursing and grumbling
And running away, and wanting their liquor and women,
And the night-fires gong out, and the lack of shelters,
And the cities hostile and the towns unfriendly
And the villages dirty, and charging high prices.:
A hard time we had of it.
At the end we preferred to travel all night,
Sleeping in snatches,
With the voices singing in our ears, saying
That this was all folly.

Then at dawn we came down to a temperate valley,
Wet, below the snow line, smelling of vegetation;
With a running stream and a water-mill beating the darkness,
And three trees on the low sky,
And an old white horse galloped away in the meadow.
Then we came to a tavern with vine-leaves over the lintel,
Six hands at an open door dicing for pieces of silver,
And feet kicking the empty wine-skins.
But there was no information, and so we continued
And arrived at evening, not a moment too soon
Finding the place; it was (you may say) satisfactory.

All this was a long time ago, I remember,
And I would do it again, but set down
This set down
This: were we lead all that way for
Birth or Death? There was a Birth, certainly,
We had evidence and no doubt. I have seen birth and death,
But had thought they were different; this Birth was
Hard and bitter agony for us, like Death, our death.
We returned to our places, these Kingdoms,
But no longer at ease here, in the old dispensation,
With an alien people clutching their gods.
I should be glad of another death."



--

Wednesday, December 16, 2009

Christmas Carols a la Nanny State

When singing carols this year - just bear the following in mind!!

The Rocking Carol


Little Jesus, sweetly sleep, do not stir;
We will lend a coat of fur,
We will rock you, rock you, rock you,
We will rock you, rock you, rock you:

Fur is no longer appropriate wear for small infants, both due to risk of
allergy to animal fur, and for ethical reasons.
Therefore faux fur, a nice cellular blanket or perhaps micro-fleece material
should be considered a suitable alternative.

Please note, only persons who have been subject to a Criminal Records Bureau
check and have enhanced clearance will be permitted to rock baby Jesus.
Persons must carry their CRB disclosure with them at all times and be
prepared to provide three forms of identification before rocking commences.


Jingle Bells


Dashing through the snow
In a one horse open sleigh
O'er the fields we go
Laughing all the way

A risk assessment must be submitted before an open sleigh is considered safe
for members of the public to travel on. The risk assessment must also
consider whether it is appropriate to use only one horse for such a venture,
particularly if passengers are of larger proportions.

Please note, permission must be gained from landowners before entering their
fields.
To avoid offending those not participating in celebrations, we would request
that laughter is moderate only and not loud enough to be considered a noise
nuisance.


While Shepherds Watched


While shepherds watched
Their flocks by night
All seated on the ground,
The angel of the Lord came down
And glory shone around

The Union of Shepherds has complained that it breaches health and safety
regulations to insist that shepherds watch their flocks without appropriate
seating arrangements being provided, therefore benches, stools and
orthopaedic chairs are now available.

Shepherds have also requested that due to the inclement weather conditions
at this time of year that they should watch their flocks via cctv cameras
from centrally heated shepherd observation huts.

Please note, the Angel of the Lord is reminded that before shining his / her
glory all around she / he must ascertain that all shepherds have been issued
with glasses capable of filtering out the harmful effects of UVA, UVB and
the overwhelming effects of Glory.


Rudolph the Red-nosed Reindeer


Rudolph, the red-nosed reindeer
had a very shiny nose.
And if you ever saw him,
you would even say it glows.

You are advised that under the Equal Opportunities for All Policy, it is
inappropriate for persons to make comment with regard to the ruddiness of
any part of Mr. R. Reindeer.

Further to this, exclusion of Mr R Reindeer from the Reindeer Games will be
considered discriminatory and disciplinary action will be taken against
those found guilty of this offence.

A full investigation will be implemented and sanctions - including
suspension on full pay - will be considered whilst this investigation takes
place.


Little Donkey

Little donkey, little donkey on the dusty road
Got to keep on plodding onwards with your precious load

The RSPCA have issued strict guidelines with regard to how heavy a load that
a donkey of small stature is permitted to carry, also included in the
guidelines is guidance regarding how often to feed the donkey and how many
rest breaks are required over a four hour plodding period.

Please note that due to the increased risk of pollution from the dusty road,
Mary and Joseph are required to wear face masks to prevent inhalation of any
airborne particles.

The donkey has expressed his discomfort at being labelled 'little' and would
prefer just to be simply referred to as Mr. Donkey. To comment upon his
height or lack thereof may be considered an infringement of his equine
rights.


We Three Kings


We three kings of Orient are
Bearing gifts we traverse afar
Field and fountain, moor and mountain
Following yonder star

Whilst the gift of gold is still considered acceptable - as it may be
redeemed at a later date through such organisations as 'Cash for Gold' etc,
gifts of frankincense and myrrh are not appropriate due to the potential
risk of oils and fragrances causing allergic reactions. A suggested gift
alternative would be to make a donation to a worthy cause in the recipients
name or perhaps give a gift voucher.

We would not advise that the traversing kings rely on navigation by stars in
order to reach their destinations and suggest the use of RAC Routefinder or
satellite navigation, which will provide the quickest route and advice
regarding fuel consumption.

Please note as per the guidelines from the RSPCA for Mr Donkey, the camels
carrying the three kings of Orient will require regular food and rest
breaks. Face masks for the three kings are also advisable due to the
likelihood of dust from the camel feet.


Away in a Manger No Crib for a Bed -

This is definitely one for Social Services!

Monday, December 14, 2009

Common Sense has Departed, but not in Peace.

Today we mourn the passing of a beloved old friend, Common Sense, who has been with us for many years. No one knows for sure how old he was, since his birth records were long ago lost in bureaucratic red tape.

He will be remembered as having cultivated such valuable lessons as:

- Knowing when to come in out of the rain;
- Why the early bird gets the worm;
- Life isn't always fair;
- and maybe it was my fault.

Common Sense lived by simple, sound financial policies (don't spend more than you can earn) and reliable strategies (adults, not children, are in charge).

His health began to deteriorate rapidly when well-intentioned but overbearing regulations were set in place. Reports of a 6-year-old boy charged with sexual harassment for kissing a classmate; teens suspended from school for using mouthwash after lunch; and a teacher fired for reprimanding an unruly student, only worsened his condition.

Common Sense lost ground when parents attacked teachers for doing the job that they themselves had failed to do in disciplining their unruly children. It declined even further when schools were required to get parental consent to administer sun lotion or an aspirin to a student; but could not inform parents when a student became pregnant and wanted to have an abortion.

Common Sense lost the will to live as the churches became businesses; and criminals received better treatment than their victims. Common Sense took a beating when you couldn't defend yourself from a burglar in your own home and the burglar could sue you for assault.

Common Sense finally gave up the will to live, after a woman failed to realize that a steaming cup of coffee was hot. She spilled a little in her lap, and was promptly awarded a huge settlement. Common Sense was preceded in death, by his parents, Truth and Trust, by his wife, Discretion, by his daughter, Responsibility, and by his son, Reason.

He is survived by his 4 stepbrothers; I Know My Rights, I Want It Now, Someone Else Is To Blame, and I'm A Victim

Not many attended his funeral because so few realized he was gone. If you still remember him, pass this on. If not, join the majority and do nothing

Mobile Phone Suppliers AGAIN!

In these posts, I told about my mobile phone services:

http://meezermagic.blogspot.com/2009/12/my-mobile-phone.html and

http://meezermagic.blogspot.com/2009/12/vodafone-phones-and-calls.html

I waited and waited for my Vodafone sim card, but it didn't arrive. Eventually, I emailed them to ask where it was, and I got a reply saying that as it was an Online Order, I would have to phone an 087 number (which is very expensive) and was told that the contract had been cancelled, due to my wanting to port my number from O2 to Vodafone. No one thought to tell me it had been cancelled.

So the lady tried to put me through to the Sales Team, and I got a recording saying "sorry. This number is not in use". So I spent half an hour lost in the maze of an automated service, never once connecting with a human being, getting more wound up by the minute. I don't generally talk on the phone because it gives me cognitive problems. Talking on the phone is very stressful for me, which is why I prefer to text or email.

So then it was back to the expensive 087 number. When a man eventually answered, I asked for his email address to send all the correspondence because I didn't want to spend another hour on the phone. That didn't work. Instead, I was put through to another (wrong) department. After a lot of hassle, someone said they would ring me back. They did in the end, but I said it was a bad omen to have so much go wrong before even starting the contract, that I wanted to cancel it.

Two more people then phoned to ask me to change my mind, and one of them offered to give me his direct line number and his email number and discounts as 'compensation'. But I was quite sure by then that Vodafone was not for me. I phoned O2, and they have given me a 30 Day Sim Only Contract with 600 minutes, 1200 texts and unlimited Mobile Internet for £19.58 a month. It is all in place, and I have kept my O2 number (the one that ends in 009) so my friends won't have to learn a new number. And I have no more hassles, thank Goodness.

I won't even think of moving to another company any more.  My nerves just aren't up to it.

Botolphs Bridge Inn

After Caelyn and Co went home, Sean and I went to have lunch at Botolphs Bridge Inn.  It had been raining but there was a brief period of sunshine.  I am fascinated by the play of light on things, so I took a few photos.  Here they are :

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This one is the view from the pub.  It is a farm, and there are sheep in the fields.  You can see my shadow as I stood outside the pub taking the photo.

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Looking down the road

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The bridge and the road to the right

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The view from the front of the pub.

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They serve lovely food and there is a warm, cosy and friendly atmosphere.  Look HERE for a picture of the whole pub in the Pub Guide. Its very rural and charming. 

Carpets and Kitchens

On Sunday, Sean went with Caelyn and Nigel to a carpet warehouse in Hythe. He very kindly paid for their hall and stairway to be carpeted. They paid for the lounge to be done, and the lady is coming to do it on Wednesday. This will be wonderful, as you can't have a baby learn to crawl on concrete. There are rugs in the bedrooms, and they will be replaced in due course, but all the important areas will be carpeted this week. In the lounge, they are having 8mm thick underlay, and it will make such a difference to them. Wendy particularly wants the stairs done, like "fluffy stairs in old house". Sean paid £280 for the hallway and stairs and they paid £300 for the lounge. Apparently the Council don't see carpets as essential, but curtains are apparently essential. I don't agree with that. You can always tape newspaper over a window, but you can't let children play on concrete in the UK winter.

While they were in Hythe, I looked after Wendy, and she was so sweet. We made Trifle together. Then she told me that she was hungry, and I asked her what she would like to eat. "Ice cream!" she said. She had a good bowlful. Last week, she was too sick to eat ice cream, so I sent it home with her mum for Wendy to have when she felt better. It was a Sainsbury buy-one-get-one –free offer.

As you can see, Wendy is quite recovered

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Teresa Jayne is pale and wheezy here, but trying to smile

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There had apparently been a fire in the kitchen of the new house and when Caelyn complained that the cupboards were bowed, the Housing Association agreed to come and install a new kitchen on Thursday, so things are really looking up. They have their cooker now, and a Bosch washing machine from my mum, a fridge/freezer, a condenser tumble drier from Tracey, a chest freezer etc. They have been very blessed. Carpets coming on Wednesday and a new kitchen on Thursday! Wow!!

Christmas Cake

I wasn't going to make Christmas Cake this year, but Michelle asked to nicely – again and again – that I relented. I bought the fruit last week and soaked it in brandy. On Saturday when Sean came we went to the 18h30 Mass, which was beautiful and holy.

When we got back, I gave him the butter and sugar to cream, while I cooked our dinner. Then he added the fruit and flour (all having been measured out by me earlier). We got the cake into the oven at 20h15. While we were waiting for it to be cooked, we went to the lounge to watch Dr Zhivago, which was a sad movie. It had Keira Knightly in it, and I could swear I've seen another version. A harsher version. This one was more romantic than the one I remember. That is to say, if what I am remembering really was Dr Zhivago. It could have been another Russian tale, and it is my experience that most Russian tales are sad and/or harsh.

Here is Sean busy with the creaming of the butter:

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Mmm. The mixture tastes good!

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The cake is in the tin under his elbow

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The cake came out of the oven at 00h15, and was given a tot of brandy straight away. When it was cool, it was wrapped in foil, and will be fed regular tots of brandy until it is time to eat it on Christmas Day. Its really tempting me though, every time I see it. I'll have to put it away somewhere. I never ice my Christmas Cake as the whole family hates the icing. Richard on the other hand, says he loves the icing and could eat a whole packet of marzipan in one sitting.

This is the recipe, if anyone is interested:

INGREDIENTS

3 cups plain flour

375g butter (3/4lb)

1 and 1/2 cups brown sugar

6 eggs

1 and 1/2 cup raisins

1 and 1/2 cup sultanas

1 cup mixed peel

box glace cherries

60g almonds (2oz)

2 teaspoons mixed spice

1 teaspoon cinnamon

2 teaspoons baking powder

pinch salt

Half cup of Brandy (or Rum or Kirsch)


 

FIRST

Soak fruit in brandy for a couple of days


 

THEN

Cream butter and sugar.

Add eggs one at a time beating well after each one.

Add the soaked fruit.

Sift in flour, baking powder, spices and salt.

Bake in a 9" square tin for 4 hrs in a slow oven.

Splash with more brandy when out of the oven.

When cool, wrap in aluminium foil and give a good sprinkle of brandy every week until you decide to eat it.

Caelyn and Co

I've been so lazy with the Blog recently that I don't really know where to start.

Wendy and Teresa Jayne have been ill with normal winter viruses. As you know, the family have just moved house and Caelyn hates mess, but has had to put her children first. Wendy is almost over it – she has a couple of times a day where she fizzles out like an empty battery, but overall she is almost back to normal. They had to take Teresa Jayne back to the Dr as she was getting worse. He put her on 3 lots of medicine, but when Caelyn opened the antibiotic, she discovered it was banana flavoured.

Teresa had a small bit of banana once, and her tongue turned navy blue and swelled up a bit, so we have decided she is not to have banana as her Auntie Michelle is very allergic to them. The last time Michelle had banana was with friends in McDonalds. They were having a McFlurry, and she took a little sip of the wrong one by mistake. She stopped as soon as she realised it was a banana one, but her face swelled up like a full moon and her tongue swelled and her throat closed and she felt awful. It is because Michelle reacts so severely that we have decided we can't take chances with Teresa. Caelyn talked it over with their Health Visitor and she is in complete agreement.

So Caelyn contacted the pharmacy and they checked all the other local pharmacies to find the antibiotic in a different flavour. It was a heck of a hassle but it all worked out in the end, and Teresa has started the antibiotic, but she is worse. Her breathing is very shallow and rapid, with a pronounced wheeze. She can't even cry properly, and on top of it she has vomiting and diarrhoea. Caelyn has had to speak to the Dr again. All Teresa wants is her Mum, and Caelyn naturally responds. She is getting precious little sleep or rest, and feels she ought to be doing more about unpacking, and going back to shampoo the carpets in her old house before officially handing it back on Thursday. She is feeling tearful and completely demoralised.

Nigel hasn't been much help. On the very day of the move, he went fishing. Caelyn did most of it, with her sick children. She has fought to get the new house in the first place, arranged the transfer of gas and electricity, organised new furniture, tried to keep the family fed without a cooker (it arrived on Saturday) and deal with the gas thermostat set dangerously high. Her kidney function is falling so she is physically toxic and feels very unwell. She has carried a huge amount on her shoulders, and she has been trying to get the place straight and tidy, but she is utterly exhausted and demoralised. These burdens have all become too heavy. She does not need Prozac; she needs a willing husband who sees what needs to be done and just gets on with it without having to be asked. A marriage is a partnership and both people need to pull their weight. Nigel needs to take more of the strain or Caelyn's health may well collapse. She is not SuperWoman.

She is seeing the Consultant about her kidney function on Wednesday, and I hope he can help her.

Tuesday, December 08, 2009

Damage Control in ME research?

Has the CDC Placed XMRV Research with Its Division of HIV/AIDS Prevention?

Original Article HERE

December 8, 2009


The following was posted Dec 7 in ProHealth’s ME/CFS Message board, and appears on a number of ME/CFS blogs. At this writing we have not seen an official statement/source that would verify this statement. The post is attributed to Dr. Timothy Luckett, and the cited source is The CFIDS Research Blogspot.

To Quote:

"CDC Damage Control: ME/CFS Research Group Relieved of Duties"

In a stunning move, responsibility for XMRV research has been taken away from the ME/CFS working group within the CDC, and re-assigned to the division of HIV/AIDS prevention. This group will be in charge of replicating findings of the Whittemore-Peterson Institute, rather than the group under the control of Dr. Reeves. The move is highly significant: it appears that the CDC is now acknowledging the serious nature of XMRV.

The CDC will be part of an interagency working group on XMRV, led by Dr. Jerry Holmberg. A three-part study will be initiated:

1. The first part will consist of standardizing and validating laboratory methods and reagents for XMRV testing. This stage will use samples provided by samples collected by Dr. Judy Mikovitz. The intention is to create an FDA approved test.

2. The second part will test a much larger sample than the initial study, trying to determine the prevalence of XMRV in the general population, and the blood supply.

3. The third part will consist of how XMRV is transmitted, how it causes disease, and how it affects various subgroups of the population.

The forceful demotion of Dr. Reeves is a sign that the CDC is in damage control mode. The HIV/AIDS prevention group in the CDC has many capable retrovirologists, who can provide years of expertise. In my opinion, this turn of events should lead to balanced, common sense research.

---------------------------------------------------------------------------------------------------

The research conducted by Dr Judy Mikovitz for the Whittemore Petersen Institute has generated a lot of excitement in the ME Community as she has isolated a retrovirus called XMRV in blood samples of 92% of ME sufferers.  People are cautiously hopeful that this will lead to a reliable diagnostic test and hopefully a treatment that really helps.  Here is what the Press have been saying about the discovery of XMRV

All we have so far is Cognitive Behavioural Therapy or CBT, which is a talking treatment that tries to get the patient to cheer up about the way ME takes over all their lives and which has limited efficacy in the short term and none in the long term, or Graded Exercise Therapy which in not as innocuous as CBT.  It requires a very skillful practitioner with the patient at the right stage of the illness and it has to be very gentle indeed, perhaps starting with sitting up in bed with an extra pillow for two minutes at a time, building up tolerance over months.  As that is so rare, experienced people warn that it does not help ME patients and frequently makes them a lot worse.  After GET, people who could use a wheelchair for a few hours a day may deteriorate to being totally bedbound, in a silent and darkened room, too weak to talk and having to be tube fed as they are too weak to eat, having to be washed and toileted like babies, and it can continue for decades.  

It is for these reasons that the ME Community is hoping, hoping, hoping for some light at the end of the tunnel.