Sunday, 20 May 2012

Message from my mother

"Rosa is very unwell at the moment. She has had a series of episodes
of being sick and a bad cold. This has left her very low in energy and
spirits. Any communication from people who understand would cheer her
up a lot.

Kind regards
Julia"

I would really like more communication from the outside world, whoever
you are, but I'm too poorly atm to reply regularly. Anyone who would
be happy to contact me regularly without expecting a reply would be
greatly appriciated. It would help conserve my sanity a lot!

My E-mail is 6chestnuts@googlemail.com. I now expect a lot of e-mails
from nutters!

Apologies to those who have seen the message from my mum already :)

Breaking the mould media campaign

May is ME awareness month. This year to raise awareness the ME community trust ( http://mecommunitytrust.org/ )is running a media campaign called 'Breaking the mould'. They wanted personal case to illustrate their article so I wrote in this short summary of me;


I've had ME for 12 years. Before that, typically, I seemed a healthy
child. I was always playing; I loved the Puppy and Kitty in my pocket
sets (still do, really)! I also went to ballet + modern dance lessons,
swimming, watch club, was beggining to learn the violin + was a junior
member of the RSPCA. Then when I was eight my grandma + hamster died
in quick succesion, followed by a unknown virus of the gut. I had a
terribly high temperature + was sick on everything even water

After such a terrible virus you'd expect me to to be rather weak but,
unfortuneately, I didn't recover. I was diagnosed with ME quite
quickly but, sadly, this didn't make my treatment any better. I was
admitted to hospital and given physio, then sent home and relasped
terribly

I don't really remember the following year. I know I lived on complan
all that time until we finally persauded our doctors to give me a
tube. I was admitted to hospital again around that time, which was a
painful experience, but was discharged after a few months

All in all I was paralyzed and bed-ridden for 7 years and was tube-fed
for 5 and a half. I remained at home, cared for by my parents. My
symptoms included; paralysis especially my legs + swallow,
hypersensitiveity, headaches, muscle pain, 'brain fog', muteness,
Orthiostatic intolerance, insommnia, spasms, severe nausea with a
period of vomiting and extreme tiredness

When I was 15 my health rapidly and dramaticly improved. My symptoms
receded. I was able to stand and use a wheelchair. At one stage I was
even able to walk independantly around the house though still needed a
wheelchair outside. I became very involved with my local wildlife
trusts. I enjoyed visiting their reserves, attending 'wild
learning'courses and was even part of a youth group.

However from the end of 2009 my health slowly worsend again until last
year, when I had a tooth infection and a bad back, I had a major crash

My worst symptom at the moment is vomiting which caused me to lose a
lot of weight (over 2 and a half stone). It comes and goes. I feel
rather like someone pushing a boulder up a hill. I'll just start to
feel better and put on weight, then a bout will hit me again. This has
led to a general worsening of symptoms especially tiredness,
hypersensitivity, cognative functioning and insommnia. I am now
housebound and have two part time carers to help look after me as well
as my parents.

I have tested positive for Mitochondria abnormalities which basically
means my body is litterally producing only half as much energy as
normal people. As well as this being a potential cause of why I feel
unwell, it also accelerates the ageing progress and causes problems
for the immune system

I always beleived that one day my body would naturally heal itself and
I'd return to my previous levels of health. Now I'm less confident of
recovering- unless someone finds a treatment.

I'm a member of the Let's do it for ME planning group - a campaign,
started by Invest in ME, to set up the 1st centre of excellence for
ME/CFS in Europe. The centre will conduct large scale, translational
research into ME/CFS funded by the charity

I haven't seen a GP once the entire lenth of this relapse. In fact its
a bizzare fact that I have only visited a GP surgury once since being
diagnosed

The centre also aims to educate medical professionals and treat
sufferers. Find out more at blog.ldifme.org

All I want is to be like other 20 year olds; to travel and go to uni;
to socialise and be independant; to walk, swim, dance and ride. I've
already lost a decade of my life to this wretched illness. Please
don't let me lose another

Friday, 9 March 2012

Let's do it for ME wristbands brigade


I am now a year older than the age Alison Hunter was when she died of
ME in 1996. I am 20 years old. Alison Hunter had suffered,
horrendously, from ME for 10 years prior to her death. Her symptoms
included seizures, paralysis, gastrointestinal paresis, heart damage,
massive ulceration to her throat, horrendous neurological problems and
overwhelming infection.
I have had ME for 12 years though fortunately not as badly as Alison
Hunter. My ME seemed to be triggered by a virus of the gut when I was
8. However the exact cause of my many unpleasant symptoms (pain,
nausea, partial paralysis, *brain fog*, extreme tiredness and lack of
stamina, hypersensitivity) was unknown to me and my family untill last
year when some Mitochondria tests gave a glimpse of at least part of
what is going wrong.
Apparently they are very, very similar to many other ME sufferers
results, essentially ATP (energy) production not working properly, low
antioxidant and mineral status and blockages in the translocator
protein membrane (the shunt that moves ATP across the membranes in
order for the ATP or 'energy' to be used by the body.) I also have low
thyroid levels. Nobody knows exactly what causes ME sufferers to have
these defeincies. But it is proof that my symptoms do have a physical
side and are not merely caused by my being an overindulged girly as
suggested by certain members of my local NHS.
As well as giving me low stamina levels my problems also accelerate
aging and causes immune problems. There is no patented cure, nor are
these tests avaliable on the NHS
I have been crocetting wristbands to raise awareness and funds for the
new centre. There are 2 different designs and they are £2:50 each. I
think this new centre is crucial if the ME community wants to move
forward, towards better understanding and care for people like Alison
Hunter and myself
So please e-mail info@investinme.org and buy my wristbands to raise awareness of the suffering
endured by teenagers with ME and funds to found a centre to provide a
better future for them
You can find out more about Alison Hunter here http://www.ahmf.org/
You can find out more about me via my blog www.rosalindamor-spaceofameguineapig.blogspot.com
Find out more about the centre and the campaign to found it here www.blog.ldifme.org

After you’ve bought them please join the facebook group to upload your photos and comments (if you have facebook) www.facebook.com/groups/402159386477114

Sunday, 22 January 2012

My Mitochondria results explained

A woman on the Phoenix rising website kindly explained my Mitochondria results in baby terms to me. Here is what she said;


Hi Rosa, i can see now where we talked about your mito results before - it was in your previous blog, sorry i hadnt remembered (brain is not my strong point these days!)
Ive read through your results and they are very very similar to all the others i have read, sometimes minor differences, but essentially ATP (energy) production not working properly, low antioxidant and mineral status and blockages in the translocator protein membrane (the shunt that moves ATP across the membranes in order for the ATP or 'energy' to be used by the body.

Basically your body is not making energy correctly (it is not known why though) which makes you extremely exhausted, you also are not rcycling ATP properly, which the body normally does so you have to make it new, this can take a few days so explains the energy lag with it taking a few days to recover from a minor setback.also you have a low antioxidant status (CO Q10 etc) which will make you feel generally ill, accelerates ageing and causes problems for the immune system. The B12 injections should provide a general immediate antioxidant 'cover' for your body and they were the best thing i ever did - be careful though with the supplements and try then out at lower doses one at a time to see how you go with them. The B12 was too high a dose for me, but alongside the magnesium the best one i have taken ( i self injest B12, but take oral mag) you are also low in other things such as minerals. This could be because of not enough stomache acid, hence low iron as well. Dr M's minerals are now available in spray on form which bypasses the gut and i recommend. I also have dioleins on my TP membranes, but i dont know how to understanf or deal with this, and from your letter and mine im not sure that DR M does either.

Infact our results are very similar - you have less ATP production than me, but i have higher cell free DNA and also some gene blockages on SODase which made my score a bit lower than yours at 25/30 out of 100 on the scale. The scale is i think useful, because it tells you what level of acitivty you ought to be aiming for - usually lower than we think!
I would follow her recomendations for the supplements, especailly B12 magnesium amd minerals, then add in the others slowly - i cant tolerate D Ribose at all as it is too stimulating and affects my hypoglycaemia - but we are all different.

She also wants you to sort out sleep as she sees this as a very important piece for recovery and alongside very strict pacing are the first things to put in place - i do agree with this strongly as most of my gains are lost if i dont sleep well or if i over do things.

She notes that your Thyroid levels are in the low end of bnormal, but says to address that at a later stage (she will probably offer you a trial of thyroxine at some stage)- she also suggests detoxing using FAR sauna ( a type of mat you buy and use to gently warm fat layers to release toxins) once you have other things in place and are feeling a bit better, in the meantime you must drasticalloy reduce your exposure to chemicals such as make up, cleaning fluids etc.
i cant think of anything else right now - i am happy to answer questions or provide my take on things if you need it.
Take care, Justy.

Monday, 2 January 2012

Christmas gifts from Father pony

My little tree
I know it probably seems a little weird to some, somebody who can't ride asking for jodphurs for Christmas. But I figured that people who don't ski wear skiing jackets + people who don't dance wear ballet pumps so why shouldn't people who don't ride wear jodphurs

The ones I'm wearing are from the Townend range I've been a pony nut since I was about 11, subscribing to magazines, playing games, watching it on tv, going on forums. But I haven't had any chance to actually ride sadly. Its difficult when half the time your so weak + dizzy its a struggle to sit, propped up, in bed never mind on a horse


My dream pony would be a bay caspian. Caspians are small horses, suited to small adults with very graceful paces from the Caspian mountains

Thursday, 29 December 2011

The 5 projects being funded by the MRCs 1.5 m

Identifying the biological fingerprints of fatigue;
Principal investigator: Dr Wan Ng
Institution: Newcastle University
Summary: Researchers will analyse the immune systems of more than 500 patients with primary Sj√∂gren syndrome – a chronic condition with similar symptoms to CFS/ME, including intense fatigue. Scientists will look for immune system abnormalities in these patients to help them identify the biological "fingerprints" of fatigue. It is hoped this will improve their understanding of the mechanisms of fatigue with a view to developing new treatments. It also offers the hope of a clinical test for the diagnosis of CFS/ME.
Understanding the pathogenesis of autonomic dysfunction in chronic
fatigue syndrome and its relationship with cognitive impairment
;
Principal investigator: Professor Julia Newton
Institution: Newcastle University
Summary: Researchers will explore what causes dysfunction of the autonomic nervous system – characterised by dizziness and light-headedness – present in up to 90 per cent of CFS/ME sufferers.
They will use functional magnetic resonance imaging (MRI) to measure changes in blood flow to the brain and how this relates to cognition and nervous system dysfunction. The researchers hope their work will lay the foundations for new diagnostic tools, a better understanding of nervous system abnormalities and the development of targeted treatments aimed at reversing these abnormalities.
Modulation of aberrant mitochondrial function and cytokine production
in skeletal muscle of patients with CFS by supplementary polyphenols;

Principal investigator: Professor Anne McArdle
Institution: University of Liverpool (joint with the University of Leeds )
Summary: Scientists will use a newly-developed technique to study the energy-generating components of muscle cells (mitochondria). Some studies have suggested that mitochondria may be dysfunctional in
CFS/ME, leading to an energy deficit. The scientists hope this will help them learn more about how CFS/ME develops and becomes a chronic condition.
Can enhancing slow wave sleep SWS improve daytime function in patients with CFS?;
Principal investigator: Professor David Nutt
Institution: Imperial College London (where as it happens my brother is studying)
Summary: Researchers will study sleep disturbance – a core symptom of CFS/ME. Experts in CFS/ME, sleep and psychopharmacology will use a drug to increase deep restorative sleep in CFS/ME patients and measure the effect on their brain function during waking hours. It is hoped the research will increase their understanding of how sleep disturbance affects CFS/ME sufferers, with a view to developing new therapies.
Persistent fatigue induced by interferon-alpha: a new immunological
model for chronic fatigue syndrome;

Principal investigator: Dr Carmine Pariante
Institution: King's College London
Summary: Researchers will examine the effects of a protein called interferon-alpha (IFN-alpha) on the immune system. IFN-alpha is produced as a protective response to viral infection and is commonly
used to treat infections such as hepatitis C. IFN-alpha also induces fatigue and flu-like symptoms in patients, similar to that experienced by patients with CFS/ME. The team will follow patients undergoing IFN-alpha treatment for Hepatitis C over a number of months to define the biological changes that occur in relation to the development of fatigue. Their work could lead to a check-list of blood measures to predict who will develop CFS/ME, as well as identifying new targets for therapy.

Although I have become sceptical of any research funded by governments, companies and the like because they always seem to skew research to fit their own policies + especially pockets, these projects do sound hopeful. Especially the Mitochondria one for me of course. Also the one on sleep as I struggle with that symptom terribly.

Just so long as they include Classic ME sufferers, not solely people with idiopathic fatugie, things seem encouraging

Sunday, 4 December 2011

Reflections on recovery

I have been doing Dr Myhills protocol of supplements,  sprays and detoxing for a couple of months now. I think it might be making a small difference but I feel stuck. After years of peuseudo recoveries + relapses, I'm scared to try and improve. I also don't feel I know how to though I have lots of plans for when I'm better.
My symptoms are currently; wind, hypersensitive to light + sound, little appetite, tiredness after exertion, headaches occasionly, insommnia occasionly, muscle weakness

A typical day;

  • 7:20 Look at book/mag, cuddle Herbert, check E-mails, drink
  • Rest for 30-40 min
  • Breakfast while listening to music/story
  • Rest for 30-40 min
  • Get up with help
  • Yoga rest for 40-50 min
  • Crochet, Watch fish/birds, Cuddle Herbert
  • Lunch while listen
  • Rest for 3 hours
  • Drink, exercises, Computer/tv, Cuddle Herbert, listen
  • Tea
  • Listen untill bedtime at 8:15

I have a physio that cones on Weds

So what I want to know is; How long did it take you for the protocol to take affect? How did you manage to get better?

I appriciate its difficult to advise me as I haven't told you my particular problems yet but I'll try to scan + copy the letter ASAP