Christmas cards

Only two days till Christmas! It doesn't feel like it somehow though we have got a bit of snow this year though not as much as the rest of the country :). Perhaps I started getting ready too early (late Oct)

This year I bought Christmas cards from ME research to support them;

The ones below are sold out as you can see but you can still buy their ordinary notecards, pic below



I made a lot as well

I expect this'll be my last blog post before Christmas so I'll wish you all a happy one :) x

Christmas 'In my pocket'

I've finally bought all my Christmas presents and sent them off in the post. I did all my shopping online as usual, mostly from these websites;

http://www.rspcashop.co.uk/

All your Christmas needs in one place, cards, gifts and wrap, with the money going towards the RSPCA

http://www.naturalcollection.com/

Ethical and eco-sourced gifts

http://www3.snapfish.co.uk/snapfishuk/welcome

Personalised photo gifts and prints

http://www.amazon.co.uk/

My Mum bought a lot of prezzies here, brill website

I don't have much of a Christmas list of my own, specially after all the lovely b'day presents I had.  I've decided to subscribe to 'British wildlife' magazine after much deliberation. It has articles on British Natural history and Conservation, coloumns by various top naturalists and book reviews.

I've been dreaming of 'In my pocket'/'Animal Hospital' pets. I loved them when I was a kid

A 'Puppy in my pocket' beach hut

They even have 'ocean in my pocket' now! Coral reef playset

Animal hospital playset

 RSPCA 'perfect pets' cross stich kit

Sunshine guppys and massages

Or perhaps it'd be better to say Sunset guppies... I bought four yesterday which are beautiful and have cheered me up a lot though this photo doesn't display them at their best. Just was the only one I could find on the web. I intended to go bird watching but it was so cold my brains felt like they were starting to freeze, not to mention my sunglasses steam up so I decided to visit the water garden cum pet shop instead to restock my almost empty tank. Some details on them and a pic;

This entertaining fish is one of the most extensively bred and readily available fish of recent years. It makes a bright addition to the middle and top of the tank. Males (3cm) are clearly recognized by their brightly-coloured fan tail, whereas females are larger (6cm) and duller. Breeding is easy approximately at 4 week intervals; females give birth to live young. Bushy plants will provide cover for young fry and may allow a few to survive in a community tank. Females may already be pregnant when purchased. As females can store sperm, a female can give birth to several separate broods without a male. An undemanding fish, although due to captive breeding (all brightly coloured guppies are captive-bred), their hardiness is much reduced compared to wild guppies, and they have become more demanding of good water conditions.

I also bought some Cardinal tetras;

The cardinal tetra, Paracheirodon axelrodi, is a freshwater fish of the characin family (family Characidae) of order Characiformes. It is native to the upper Orinoco and Negro Rivers in South America.
Growing to about 3 cm (1.25 in) total length, the cardinal tetra has the striking iridescent blue line characteristic of the Paracheirodon species laterally bisecting the fish, with the body below this line being vivid red in color, hence the name "cardinal tetra". The cardinal tetra's appearance is similar to that of the closely related neon tetra, with which it is often confused; the neon's red coloration extends only about halfway to the nose, and the neon's blue stripe is a less vibrant blue, however.
The cardinal tetra is a very popular aquarium fish but is less widespread than the neon tetra because until recently it was difficult to breed in captivity. However, many breeders are now producing the fish; in most cases one can determine if the cardinal tetra is bred or wild caught due to damaged fins on wild caught specimens. Normally aquarists prefer to buy tank bred fish but some Brazilian ichthyologists believe that fishkeepers should continue to support the sustainable Cardinal fishery of the Amazon basin, since thousands of people are employed in the region to capture fish for the aquarium trade. It has been suggested that if those fishermen lost their livelihood catching Cardinals and other tropical fish, they might turn their attention to engaging in deforestation.

 and some baby tiger barbs to keep my single, remaining adult tiger barb company;

The Tiger Barb is one of the more widely kept members of the Barb family, especially because of its looks and behavior. They're small, very active, playful and usually not shy at all. One of the more well known traits of the Tiger Barbs is a tendency to "fin nip" on other fish. Long finned species such as Angels and Bettas are especially victimized. My experience has been that this behavior can be avoided if you keep them in small groups (5 or more). In this case they spend most of the time chasing each other around and tend to leave the other species alone. Lonely tiger barbs, on the other hand, seem to feel bored or insecure and start fin nipping as some sort of defensive instinct. A beautiful green strain and an albino variety are often available in fish shops.

Animals always make me feel more relaxed and warm, whether I'm reading about them, watching, or just cuddling the g-pigs. Its not just that the natural world fascinates me or distract me, reflecting on it puts everything into perspective somehow. Basically the study of the natural world is the study of the rich tapestry of life and it reminds you of the tivialness of your own existence, how fleeting our terrible civialisation is and the rightness of death.

Mum has also been giving me massages before I go to bed to help me relax more. This has helped my stress a lot. I now have no need to take any Melatonin whereas before I was taking 5 tablets! She is training to be a biodynamic massage therapist so its good for her to get lots of practice too

I'm seeing a alternative practitioner called Mark for counselling. His son has serious thyroid problems so I feel alright talking to him as he is used to sick teenagers and ignorant, scared Drs 

A series of unfortunate events; why I've been slightly depressed recently

I'm very sorry if I've upset anyone with my recent facebook updates. Ever since Fred died I seem to have gone to pieces rather. Partly because he was my emotional crutch which suddenly got whisked from under me and partly because his death was the last in a row of stressful events.

My stress has been due to a number of things. Partly Dr Wights tests and all this recent research breakthroughs such as XMRV and the viral research on children, has been digging up uncomfortable feelings for me. I mean I'm delighted they are making some small progress finally but it feels like the moment of truth and I feel uncomfortable about being one of the people they're testing on in case my tests come up negative. What if I'm really some weird hypochondriac like all my local Drs claimed? Its daft because I regard being mentally ill as just as valid as being physically ill if you know what I mean. Its just that I didn't appear to be either physically or mentally ill but I ob wasn't normal either! I was so worried about this I didn't read the results properly when they first came through and got into a real state, convincing myself they'd found nothing wrong with them! I was just about to tell Dr Wight and his pesky tests to get lost when he told me they'd found a fault with my Mitochondria and suggested a treatment. That was the turning point when I decided to give him a chance and set up this blog to record my journey

I've felt guilty for a long time for being unable to find many positives in my ME and having acheived so little during the worst part.  The ME mags are full of stories of the positives people have found of having ME and and even on the forums I visit their full of 'severely affected' people who manage much more than I did during my worst (and even my slightly better). I mean I've done things since I started to recover fully but somehow it doesn't seem to count as I didn't regard myself as 'severely' ill when I did them.

Then there is the worst of my concerns, the one that actually makes me cry, which is I spent a long time when I was a child being scared of the Drs I was under taking me away from my parents and abusing me untill eventually I died because they'd made my health so bad. The terrible part is when I recovered and started to research ME I discovered that had actually happened, people had been torn away from their families, thrown in physiatric wards against their will, and died of lack of care and abuse. What makes me stricken now is how little is being done to stop it and how reluctant my fellow sufferers are to talk about it. If we can't even face up to it, how can we change it? The stories I read liberated me to understand my own but now I'm also chained by their ghosts. I can't just ignore them, I understand too about what they went through.

I was so hoping Dr Wights treatments would cure me so I had more strengh to change things. So far nothing miraculous has happened though which is my last cause of discontent   

'When I grow up'

I've spent so long dreaming of living a healthy life that it seems weird to think I might ever have one now! Rather like someone whose lived on the street all their life dreaming of a warm home and a family. I've gone from saying 'When I'm better' to 'When I grow up' as the time I've been ill lenthened and I realised I'd be unlikly to recover before I became a grown up. I still use that phrase even though I am a grown up officially now, though I guess I am still a sort of teenager?

Some dreams for my future;

1. Volunteer for Suffolk Wildlife Trust or/and The Amateur Entomology society
2. Go to university to study some kind of Life science
3. Graduate and work as a freelance ecologist/zoologist/environmental campaigner
4. travel in Canada, South America and New Zealand (Ben, my brother and Hannah, his girlfriend are going to South America next year, lucky things!)
5. Swim, sail, dive, bike and Mambo dance
6. Live independently with 3 rats, a chinchilla called Pikachu (because chinchillas always remind me of him!, and guinea pigs naturally. Maybe even some chickens  

My Mum had another phone consultation yesterday with Dr Wight. He has recommended we increase the Naltrexone, have 2ml in the morning as well as 4.5 in the evening. He is pretty convinced I have XMRV and that the Naltrexone will help that so fingers crossed!

More videos/photos of Jeremy; my baby guinea pig come tiny terror

My angel :)

'The real sleeping beauty'

I was watching a programme yesterday about a 16 year old girl who suffers from Kleine Levin syndrome. Kleine Levin syndrome is a rare sleep condition that affects one in a million people and possibly not surprisingly has no known cure. Throughout the programme there was a lot of emphasis on this lack of cure which set me thinking about my own condition which affects up to 150,000 in the UK alone but likewise has no known cure or diagnosis test (or so the health departments involved with government claim). Although I doubt that all of those people have the classic ME type, its still its a amazing number!

Especially when you think that, although I'm sure its very frustrating for Louisa (the girl) to live with, the episodes only last a couple of weeks and in between she is able to party, socialise, dance and attend schooll. Whilst I by contrast was not able to perform such basic bodily functions as eating, sleeping and talking ( sometimes even breathing) for the first seven years of my illness.

Whats really frustrating is, although I know my fellow sufferers claim that the reason the health athorities trivialise ME in order to save money on research and services, it would actually save them as much as £6.4, billion money in the long term with all the people who'd be able to return to work

Anyways if you wish to watch the programme 'The real sleeping beuaty' go to  http://www.bbc.co.uk/iplayer/search?q=The%20Real%20Sleeping%20Beauty



You will also see if you go to the Videos and Slideshows page new videos on XMRV

The programme did also set me thinking how much ME could really do with a good looking, cute, bubbly ambassador. So long as they were passionate about ME and its impact too. Ah well, Chlay'll just have to hurry up and get famous

Hope your all AWAP :)

Interview with the RSPCA parliamentary officer, Stacey Frier

I've been a member of the RSPCA for about 12-13 years, since I was 6. As as teenager I was a founding member of their teenage committee. This mostly involved redesigning the teenage membership package and magazine pages (there isn't a individual mag for teen members, as yet anyway, just a couple of specially dedicated pages in the adult mag). They now have a group of teenagers, one of which was me, who write the debates, articles and career interviews on these pages. Officially I'm not on the committee anymore as I'm too old but recently I got an E-mail asking me to interview and then write a piece on being an RSPCA parliamentary officer for them. The interview is shown below; 

Q. What does a parliamentary officer do?

A. I lobby the government and the EU on animal welfare issues, making sure the RSPCA’s views are known and providing information.

Q. What does an average day at work involve?

A. I travel to Westminster a couple of days a week to have briefing meetings with various MPs. Other days are spent in the office, dealing with E-mails, checking what’s coming up in the current political business.

Q. What is the most rewarding part of your job and why?

A. Succeeding in getting a piece of law through that you know will benefit animal welfare

Q. How did you become a parliamentary officer?

A. I studied politics at Hull University, then worked in a MPs office for a while. I also worked as part of the political team at ‘Age Concern’, before moving on to work for the RSPCA.

Q. What skills do you need to be a Parliamentary officer?

A. You need to be politically sensitive and aware. It helps to have good communication and negotiation skills. Learn to think quickly, on your feet, as often you’ll be dealing with MPs who have completely different views to you and they tend to change the course of an argument quickly so it’s important to be able to keep up.

Q. What advice would you have for young people wanting to become involved with politics?

A.  Go into it wholeheartedly. Get your name known, be opinionated and don’t be afraid to ruffle some feathers! E-mail or snail mail your MP expressing your views on subjects you’re passionate about, and you could also contact them for office work experience.

Q. Which animal welfare political issues concern you most?

A. At the moment badger culling and the use of animals in experiments.

(Surprisingly the same ones that concerm me most!)

Q. Which areas of animal welfare, do you think, have you most impacted on?

A. The Animal Welfare Act 2006 is the piece of legislation I’m most proud of getting through parliament because it provides a whole framework for current animal welfare, raised the profile of animal welfare and defines how the RSPCA operates

It will be published in the Spring issue of 'Animal life'.

For more information on badger culling click;      http://www.rspca.org.uk/media/news/story/-/article/EM_Badger_Cull_plans_unscientific

And for animals in experiments;  http://www.rspca.org.uk/sciencegroup/researchanimals/-/article/RAD_ResearchAnimals

I'm currently looking for another preferably monthly, retuable magazine on general natural history/zoology to subscribe to. All my other general conservation/animal welfare magazines are quaterly and I'd like something that keeps me even more up to date, as well as something else to look forward to receiving in the post. So if you of any, please let me know!   

The Hummingbirds severity guide to ME

I was talking a while ago about the difficulties of judging the severity of your ME. The main problems appeared to be the broad breadth of the three levels (mild, moderate and severe) and the fact that you could be very disabled in some ways (such as cognitively, physically or smyptom wise)and not in others. It was suggested that I made up a different ability scale like the scale used by weather forecasters (just a pity you can't actually forecast you ability level). However whilest surfing ME ability scales on the web I found this which I thought was very good.

1. Because it had 6 categories, mild, moderate, moderate to severe, severe, very severe, and profoundly severe
2. It was split into three parts, physical, cognitive and symptom severity

It can help ME sufferers moniter their progress over time

You can download a paper copy of it from here;
http://www.hfme.org/themeabilityscale.htm

On the physical scale I'm about 40-50%, on the cognitive 50-60 %, and symptom wise 70-80%.

Reply to my recent compaign on XMRV

I have received a reply in response to my recent lobbying on XMRV!;

Dear Ms Amor,
 
Thank you for your email of 12 November about xenotropic murine leukaemia virus-related virus (XMRV) and chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME).  I have been asked to reply.
 
Whilst the Department of Health agrees with the World Health Organization’s classification of CFS/ME as a neurological condition of unknown cause, it has many different potential causal factors, including those of a neurological, endocrinal, immunological, genetic, psychiatric and infectious nature, which have been investigated, but the diverse nature of the symptoms cannot yet be fully explained.
 
More research into the causative factors of CFS/ME is needed.  The Medical Research Council (MRC) has recently identified and prioritised research topics where high-quality proposals should be encouraged.  This exercise involved both experts in the field of CFS/ME and research leaders in aligned areas.  Further information on this work can be found on the MRC website at www.mrc.ac.uk/Ourresearch/ResearchInitiatives/CFSME/index.htm.
 
Regarding the recent interest around the role of XMRV, its precise role in the causation of CFS/ME remains a source of debate within the scientific community.  A recent study in the USA reported that XMRV has been detected in a number of CFS/ME sufferers.  The results of this study have not been replicated in Europe.  An ongoing research programme characterising XMRV at the MRC’s National Institute for Medical Research recently investigated the basis for this finding.  The study, which was funded jointly by the MRC, the Wellcome Trust and the CFS Research Foundation, failed to replicate the findings of other studies in this area and found no association between XMRV and CFS/ME.
 
In addition, an expert subgroup of the National Expert Panel for New and Emerging Infections (NEPNEI) met in May 2010 to consider all available evidence about XMRV and conduct a risk assessment.  The subgroup concluded that XMRV can infect humans but there is currently no evidence that it causes human disease and that, on the evidence before the group, no public health action is required at this time.  Since the subgroup meeting in May there has been no new scientific evidence that would change these conclusions.  In July, the Advisory Committee on the Safety of Blood, Tissues and Organs (SaBTO), similarly decided not to recommend further measures at present.  Both groups will continue to monitor the situation.
 
Both NHS Blood and Transplant (NHSBT) and Health Protection Agency (HPA) experts concur with the views expressed by NEPNEI and SaBTO and also recognise the need for further research on the prevalence of XMRV in the UK.  In a recent unpublished pilot study conducted by NHSBT/HPA, a series of 540 randomly selected English blood donors were screened for XMRV and none were found to be infected.
 
The UK Blood Service’s decision to exclude people with CFS/ME from donating blood is to protect the patient, not because of any potential infection risk.  CFS/ME is a relapsing condition and blood donation may be detrimental to the affected person.  This decision is in line with practice for other conditions where individuals are permanently excluded from blood donation to protect their health.
 
I hope this reply is helpful.
 
Yours sincerely,
 
Jonathan Tringham
Customer Service Centre
Department of Health

Be interested on other peoples thoughts on this E-mail