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.
Showing posts with label ME. Show all posts
Showing posts with label ME. Show all posts
Sunday, 22 January 2012
Monday, 2 January 2012
Christmas gifts from Father pony
 |
| My little tree |
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
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 Sjögren 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
Principal investigator: Dr Wan Ng
Institution: Newcastle University
Summary: Researchers will analyse the immune systems of more than 500 patients with primary Sjögren 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
Tuesday, 10 May 2011
Twas' a long road and a hard one
Nausea has dominated my ME. In fact its how it seemed to be triggered.I had a mysterious enterovirus when I was 8. It was never properly investigated, so I don't know exactly what kind it was, but it made me
very ill - extraodinarily high temperture, intense nausea, vomiting on everything
For most of my ME nausea and IBS have been my two main symptoms. First I had chronic constipation, then constant diarrea which only stopped when I started taking bio-acidophilus forte (friendly bacteria
tablets). I've suffered nausea so intense I've had to be on a drip to prevent dehydration. It has improved of late but I still suffer when I'm 'done in'; for instance when we went to Centre Parks. I've been talking about it on Foggy friends and several members have complained its their most delibitating symptom
"It is horrible and very debilitating" Beauty
"I don't often suffer with nausea but my daughter (10) does. It's so frustrating because she will miss what little school she does because of it. She eats little and often and has some medication but often nothing seems to help" cookie
"Vomiting is horrible because it is so utterly exhausting" Lizbeth
very ill - extraodinarily high temperture, intense nausea, vomiting on everything
For most of my ME nausea and IBS have been my two main symptoms. First I had chronic constipation, then constant diarrea which only stopped when I started taking bio-acidophilus forte (friendly bacteria
tablets). I've suffered nausea so intense I've had to be on a drip to prevent dehydration. It has improved of late but I still suffer when I'm 'done in'; for instance when we went to Centre Parks. I've been talking about it on Foggy friends and several members have complained its their most delibitating symptom
"It is horrible and very debilitating" Beauty
"I don't often suffer with nausea but my daughter (10) does. It's so frustrating because she will miss what little school she does because of it. She eats little and often and has some medication but often nothing seems to help" cookie
"Vomiting is horrible because it is so utterly exhausting" Lizbeth
Friday, 29 April 2011
Surgery, relapse and a death; the week my life fell to peices again
Hi all in cyberspace, sorry I haven't posted for a while.
So lets start with the surgery. On a Tuesday a couple of weeks ago I
went to the dentists to have the hole in my tooth filled in. I was
already struggling - the tooth infection had left me with an upset
tummy and tired. My Scoliosis had also been playing up badly making
resting difficult. Afterwards I went home and did pratically nothing
for the rest of the day apart from giving my guinea pig, Barney, a
cuddle. Little did I realise it'd be my last one.
In the evening, after I'd gone to bed I became violently nauseus. I
vomited and wretched constantly, literally every 5 mins, for about the
next 12 hours. The situation was only made worse by the fact I had
nothing to actually vomit on. My tummy became very sore and it was a
long time before I could even manage a small drink. It was also very
frightening. It reminded me of the ME symptom I had when I was little.
I think it was a recurrance of it though the doctors said it was just
indigestion or a bug. Needless to say neither of these doctors
actually saw me in the flesh
I'd only just started to recover from this, and realise I wasn't going
to die from dehydration after all, then I was forced to confront the
spectre of death again. Barney became very ill. My Mum rushed to him
the vets.The vet couldn't examine him properly though as his mouth was
full of saliva. She thought the only thing to do was put him under
anesthetic. This is very dangerous for guinea pigs but after tearful
discussion over the phone, which was hampered by my struggling to
talk, we agreed to go ahead. He survived it but died that night
I've been pretty rough since
Apoligies if this isn't the happiest of posts
x
So lets start with the surgery. On a Tuesday a couple of weeks ago I
went to the dentists to have the hole in my tooth filled in. I was
already struggling - the tooth infection had left me with an upset
tummy and tired. My Scoliosis had also been playing up badly making
resting difficult. Afterwards I went home and did pratically nothing
for the rest of the day apart from giving my guinea pig, Barney, a
cuddle. Little did I realise it'd be my last one.
In the evening, after I'd gone to bed I became violently nauseus. I
vomited and wretched constantly, literally every 5 mins, for about the
next 12 hours. The situation was only made worse by the fact I had
nothing to actually vomit on. My tummy became very sore and it was a
long time before I could even manage a small drink. It was also very
frightening. It reminded me of the ME symptom I had when I was little.
I think it was a recurrance of it though the doctors said it was just
indigestion or a bug. Needless to say neither of these doctors
actually saw me in the flesh
I'd only just started to recover from this, and realise I wasn't going
to die from dehydration after all, then I was forced to confront the
spectre of death again. Barney became very ill. My Mum rushed to him
the vets.The vet couldn't examine him properly though as his mouth was
full of saliva. She thought the only thing to do was put him under
anesthetic. This is very dangerous for guinea pigs but after tearful
discussion over the phone, which was hampered by my struggling to
talk, we agreed to go ahead. He survived it but died that night
I've been pretty rough since
Apoligies if this isn't the happiest of posts
x
Saturday, 19 February 2011
The art of disapointments
I'm disapointed about a couple of things atm.
Firstly Foggy Friends has closed its 'News, Views, Campaigns and Petitions forum, because its too difficult to moderate apparently, so I can no longer so easily keep up with the latest ME news or debate issues close to my heart. Its true I read the ME Research and Invest in ME newsletters but my main avenue of socialising with other sufferers is now closed off. I always thought they were such a democratic, well moderated bunch of folks too
I've been complaining about it to a man called cazzh who offered to moderate it so it could be reopened. Needless to say they took no interest;
Hi,
Just read your comment on the closing down of the 'News, etc' forum and would like to say I'd really appreciate it if you either moderated the forum so it could be reopened or started something else like it for people like me who want to have serious discussions can do.
Because we, as an ME community, need to have serious discussions. So that the parents of 22 year year old women like Joanne Butler aren't persecuted to the extent they have to leave their home, when their daughter dies of natural causes, because people refuse to admit ME is a fatal disease. So that children and severely affected adults aren't torn away from their loving families to be tortured in mental hospitals. So that people like 19 year old Alison Hunter don't die of mutiple, horrendous abnormalities that wouldn't be out of place in a sci-fi film. So that children like me don't grow up bedridden in a blacked out room with triple glazing
We need to help all our fellow sufferers on a world wide level, not just a personal one. There is more serious things than a few hard words and hurt feelings at stake
There are things that can help us but we need to fight for them. We all deserve a point of view so that we can all benefit in the way we need.
There are enough ME chat rooms for the pretty ones who only want to chat about craft, shopping and kittens. We need somewhere where those who want to fight can debate, exchange ideas and support each other and those that really suffer
Thank you
Rosa x
His reply;
Hi Rosa and thanks for you message. I thought nobody had noticed my posts actually, lol!
Well I offered help and was contacted by no-one privately plus then one of the mods stated on the thread that they were not looking to expand the team etc? Well I have plenty of experience to offer where moderating difficult topics on busy forums is concered but they would rather carry on just closing threads down and removing boards instead so I shan't be offering again. As for running my own forum, that is a hell of a lot of work (have done it before - not ME related) and is not a job for just one person. It is not that easy to get 'good' mods either though with the pet forum I ran back then, I knew all of my mods in real life too and also gave them some training.
I agree with you that we should be able to discuss serious topics but now it seems that anything that remotely resembles 'politics' is going to get suppressed.
Why we can not be treated like adults and be moderated properly instead of them taking the easy way and just not allowing important, serious topics is quite beyond me but at the end of the day, it is their forum and they can run it any way they like. If they want to kill the forum slowly by refusing to allow civilised debate under the guidance of experienced and impartial mods then that's their look out. 
I may start my own ME political forum so if you'd be interested in that, let me know!
Another source of irritation is my local GPs. They've shown no interest in the results of Dr Wights tests, never offer me any interest or support, didn't even fill in my prescription for LDN. Basically they're a waste of time. I'm finally going to leave them though. So we soldier on...
All that and toothache on top :p
Firstly Foggy Friends has closed its 'News, Views, Campaigns and Petitions forum, because its too difficult to moderate apparently, so I can no longer so easily keep up with the latest ME news or debate issues close to my heart. Its true I read the ME Research and Invest in ME newsletters but my main avenue of socialising with other sufferers is now closed off. I always thought they were such a democratic, well moderated bunch of folks too
I've been complaining about it to a man called cazzh who offered to moderate it so it could be reopened. Needless to say they took no interest;
Hi,
Just read your comment on the closing down of the 'News, etc' forum and would like to say I'd really appreciate it if you either moderated the forum so it could be reopened or started something else like it for people like me who want to have serious discussions can do.
Because we, as an ME community, need to have serious discussions. So that the parents of 22 year year old women like Joanne Butler aren't persecuted to the extent they have to leave their home, when their daughter dies of natural causes, because people refuse to admit ME is a fatal disease. So that children and severely affected adults aren't torn away from their loving families to be tortured in mental hospitals. So that people like 19 year old Alison Hunter don't die of mutiple, horrendous abnormalities that wouldn't be out of place in a sci-fi film. So that children like me don't grow up bedridden in a blacked out room with triple glazing
We need to help all our fellow sufferers on a world wide level, not just a personal one. There is more serious things than a few hard words and hurt feelings at stake
There are things that can help us but we need to fight for them. We all deserve a point of view so that we can all benefit in the way we need.
There are enough ME chat rooms for the pretty ones who only want to chat about craft, shopping and kittens. We need somewhere where those who want to fight can debate, exchange ideas and support each other and those that really suffer
Thank you
Rosa x
His reply;
Hi Rosa and thanks for you message. I thought nobody had noticed my posts actually, lol!
Well I offered help and was contacted by no-one privately plus then one of the mods stated on the thread that they were not looking to expand the team etc? Well I have plenty of experience to offer where moderating difficult topics on busy forums is concered but they would rather carry on just closing threads down and removing boards instead so I shan't be offering again. As for running my own forum, that is a hell of a lot of work (have done it before - not ME related) and is not a job for just one person. It is not that easy to get 'good' mods either though with the pet forum I ran back then, I knew all of my mods in real life too and also gave them some training.
I agree with you that we should be able to discuss serious topics but now it seems that anything that remotely resembles 'politics' is going to get suppressed.
Why we can not be treated like adults and be moderated properly instead of them taking the easy way and just not allowing important, serious topics is quite beyond me but at the end of the day, it is their forum and they can run it any way they like. If they want to kill the forum slowly by refusing to allow civilised debate under the guidance of experienced and impartial mods then that's their look out. I may start my own ME political forum so if you'd be interested in that, let me know!
Another source of irritation is my local GPs. They've shown no interest in the results of Dr Wights tests, never offer me any interest or support, didn't even fill in my prescription for LDN. Basically they're a waste of time. I'm finally going to leave them though. So we soldier on...
All that and toothache on top :p
Wednesday, 19 January 2011
A broken spear
Since Dr Wights disappearance from the scene we've struggled to find another source to supply us with LDN.
Dr Wight did give us the web address of some online docters who could supply us but they won't do so without your usual Dr signing a form basically stating you have a genuine medical condition and would benefit. Sadly my Mum went round to my GP with this form but she never got back to us saying she'd signed it. Fortunately they accepted a letter from my OT, which she'd written at the end of last Summer just when I was starting LDN stating I had ME and had been started on LDN by my Dr W. This was a relief.
Another place we tried was a consultant at Breakspear hospital, Dr Terry something (I can't remember his last name). Breakspear said they'd be happy to prescribe LDN for me but only if they were able to see me in the flesh first. They weren't happy to just have a telephone consultation, nor could they do a home visit as they're based in the north of England. It'd be difficult for me to travel there
We briefly discussed as a family asking their advice on what might benefit me and what specialists to go see. Apparently they cost an arm and a leg to pay to be a patiencent there though, someone on FF said they knew people who'd ended up selling their house to pay their expenses.
I hate England. All people do here is make a mountain out of what could be less than a molehill. As soon as I'm a proper adult and finished my degree ( and Barney and Jeremy/Herbert have safely passed away) I'm going to emigrate to Canada. They treat ME like any other illness there
One good piece of news to round things off. Dr Sarah Myhill has sucessfully appealed against her suspension and is now working again and taking on new clients. So if Dr Wight doesn't restart his clinic I could always go under her and she'd give me LDN!
Dr Wight did give us the web address of some online docters who could supply us but they won't do so without your usual Dr signing a form basically stating you have a genuine medical condition and would benefit. Sadly my Mum went round to my GP with this form but she never got back to us saying she'd signed it. Fortunately they accepted a letter from my OT, which she'd written at the end of last Summer just when I was starting LDN stating I had ME and had been started on LDN by my Dr W. This was a relief.
Another place we tried was a consultant at Breakspear hospital, Dr Terry something (I can't remember his last name). Breakspear said they'd be happy to prescribe LDN for me but only if they were able to see me in the flesh first. They weren't happy to just have a telephone consultation, nor could they do a home visit as they're based in the north of England. It'd be difficult for me to travel there
We briefly discussed as a family asking their advice on what might benefit me and what specialists to go see. Apparently they cost an arm and a leg to pay to be a patiencent there though, someone on FF said they knew people who'd ended up selling their house to pay their expenses.
I hate England. All people do here is make a mountain out of what could be less than a molehill. As soon as I'm a proper adult and finished my degree ( and Barney and Jeremy/Herbert have safely passed away) I'm going to emigrate to Canada. They treat ME like any other illness there
One good piece of news to round things off. Dr Sarah Myhill has sucessfully appealed against her suspension and is now working again and taking on new clients. So if Dr Wight doesn't restart his clinic I could always go under her and she'd give me LDN!
Sunday, 16 January 2011
The Chrysalis
The biggest difference is in my walking and standing. To be blunt I haven't been able to stand for 11 years or walk either, apart from a short period in 2009, when I was able to walk around the house but not like this. I'm much more stable and it doesn't leave my legs ache like it did before.
I'm now able to do 20-25 mins of yoga every day rather than 10 mins as before. Usually I do the stretches in the 'Before you start' section of my 'Yoga for common ailments' book and then some proper yoga postures from my 'Yoga for you' book. I've now restarted my chair yoga classes, after the Christmas break as well. I particularly emphasise the 'Cows Head' posture and the spinal stretches to try and correct (or at least manage) my scoliosis (crooked spine). I only do the prone and sitting asanas though as I still find holding standing postures difficult. I'm sure yoga has done divends to help my physical well being as, now I'm well enough to walk, disconditioning isn't stopping me from progressing
I have more stamina than I used to but still don't have as much energy as my peers. I spend about 3 to 3 and a half hours lying down, resting, but that could be due to my Mitochondria damage I suppose.
I finally feel like I'm well enough to do some formal study, also for the first time in 11 years, so I am feeling quite a lot better than I was all the same. I left school when I was eight so obviously failed to sit any GCSEs or A-levels. However I've decided to do some level one science courses with the OU which don't require any previous qualifications. The first one I'm doing starts in Feb and is called Neighbourhood Nature so I'm busy swotting up on my graphs and data analyse.
I've been reading up a bit more on LDN. According to the MSRC (Multiple Sclerosis Resource Centre) it works by 'the temporary inhibition of endorphins (a natural pain-killer, produced in the brain). This results in a reactive increase in the production of endorphins, which would expectedly result in a reduction in painful symptoms and an increase in the sense of wellbeing. In addition, increased levels of endorphins would also be expected to stimulate the immune system'. However under situations of stress or secondary virus/infection you can still experience flare ups of old symptoms, even relapses so maybe thats why it took a while for it to work for me? Due to the cold and dear Freddie? This info is all intended, of course, for MS sufferers
A few 'before LDN' pics like they have on 'Home and Garden' makeover programmes;
The above was taken a few years ago but still applied pretty well last Summer. I spent a lot of time lying down on the same bed with the same kind of expression.
Me at a weekend camp last Summer with my wheelchair.
And after LDN;!
Saturday, 8 January 2011
A breif history of ME with case studies- (updated)
You may be wondering who and what I was referring to in my Dec post 'A series of unfortunate events; why I've been slightly depressed recently' when I mentioned the people who died of lack of care and abuse.
In order to help you understand I thought I'd first give you a basic history of ME;
ME is probably the most controversial and deliberately misunderstood illness in medical history. Myalgic Encephalomyelitis (ME) has been documented in the medical literature from 1934. It has been classified, by the World Health Organisation in the International Classification of diseases, as a organic, neurological condition since 1969. It shows very obvious, physical symptoms and signs of abnormal body functions under lab conditions
However it has been encouraged to be belittled and confused with Chronic Fatigue in the UK since 1988 (simply long term tiredness, probably psychiatric) by members of the Wesseley school. Simon Wesseley is obviously at the head of this school of thought. In case you haven't heard of him, he is Professor of Epidemiological and Liaison Psychiatry at Guy's, King's and St Thomas' School of Medicine, London and at The Institute of Psychiatry, where he is Director of both the CFS Research Unit and the Gulf War Illness Research Unit. He is well-known for his strongly-held beliefs that neither ME nor Gulf War Syndrome exists, and that such patients are mentally, not physically, ill. Seems a bit odd that he is heading research into ilnesses he doesn't believe in. He is also an adviser to the government and medical insurance companies.
He believes that rather than a physical disease being at the heart of ME, the sufferers are merely self obsessed hyperchondriacs and any self respecting Dr would be disgusted with them. He encourages the government not to take ME as a serious disease on this basis.
This has led to a lot of stigma around the illness and very few services, treatments or biomedical research.
Here are a few case stories
Ean Procter;
In 1988, a formerly healthy 12 year old boy named Ean Proctor from the Isle of Man had been suffering from ME since the autumn of 1986; his symptoms included total exhaustion, feeling extremely ill, abdominal pain, persistent nausea, drenching sweats, headaches, recurrent sore throat, heightened sensitivity to noise and light and loss of balance; he was also dragging his right leg. In 1987 his condition had rapidly deteriorated; he had gradually (not suddenly as may occur in hysterical disorders) lost his speech and was almost completely paralysed (which lasted for two years). He had been seen by Dr Morgan-Hughes, a senior consultant neurologist at the National Hospital in London, who had reaffirmed the diagnosis of ME and advised the parents that ME patients usually respond poorly to exercise until their muscle strength begins to improve; he also advised that drugs could make the situation worse.
Sophia Mirza;
Sophia died under very distressing circumstances on Nov 25th 2005. She showed all the classic signs of classic ME( hypersensitivity, muteness, severe pain, food allergys) but was sectioned in a mental health hospital against her will, under the mental health act, for two weeks in July 2003. This was due to the Drs blaming her Mother, Criona Wilson, for causing her condition. Her mother, quite rightly, blames her incarnation there for worsening her symptoms and subsequent death. Upon her death a autopsy was carried out. At first her cause of death could not be determined. Thanks to Simon Lawrence her spinal cord was taken away for research by Dr Chaudhuri and Dr O’Donovan which discovered unequivocal inflammatory changes affecting the special nerve cell collections (dorsal root ganglia) that are the gateways (or station) for all sensations going to the brain through the spinal cord. The changes of dorsal root ganglionitis seen in 75% of Sophia‘s spinal cord were very similar to that seen during active infection by herpes viruses (such as shingles). The cause of death was however determined as acute anuric renal failure. The other symptoms were classed as the secondry reason of death. However I think the inflammatory changes are a more significant contributing factor in her death, as I explained in a Nov post, that is the meaning of 'Myalgic Encephalomyelitis'. The cause of her illness certainly had nothing to do with her mothers handling of her.
You can find out more at her website http://www.sophiaandme.org.uk/
Libby Meyers;
Libby Meyers, 62, is in a nursing home in Charlton Down near Dorchester but her family want her to be treated at a specialist NHS centre, the Chronic Fatuige Syndrome unit at Queens hospital in Romford in Essex. Her husband and daughter have appealed three times but their applications have been rejected by NHS Dorset.
Mrs Meyers' husband Hugh, from Stratton near Dorchester, said his wife had simply been "abandoned" with no NHS treatment since 2007. Her bed in the Chestnut Nursing Home is being paid for by the family. Their third appeal against NHS Dorset's decision not to fund treatment in Essex was turned down recently and they now have no further right to appeal. Her husband says "She's had assessments [by local NHS] and they've all said 'sorry, she's too severely ill and we've got nothing that can help her. It may be expensive to send her to Essex but the cost implications of a woman of 62, who could probably survive in horrendous conditions for another 20 years, it doesn't make sense."
Their daughter Fiona Meyers says "They've left mum to rot in a nursing home.
In order to help you understand I thought I'd first give you a basic history of ME;
ME is probably the most controversial and deliberately misunderstood illness in medical history. Myalgic Encephalomyelitis (ME) has been documented in the medical literature from 1934. It has been classified, by the World Health Organisation in the International Classification of diseases, as a organic, neurological condition since 1969. It shows very obvious, physical symptoms and signs of abnormal body functions under lab conditions
However it has been encouraged to be belittled and confused with Chronic Fatigue in the UK since 1988 (simply long term tiredness, probably psychiatric) by members of the Wesseley school. Simon Wesseley is obviously at the head of this school of thought. In case you haven't heard of him, he is Professor of Epidemiological and Liaison Psychiatry at Guy's, King's and St Thomas' School of Medicine, London and at The Institute of Psychiatry, where he is Director of both the CFS Research Unit and the Gulf War Illness Research Unit. He is well-known for his strongly-held beliefs that neither ME nor Gulf War Syndrome exists, and that such patients are mentally, not physically, ill. Seems a bit odd that he is heading research into ilnesses he doesn't believe in. He is also an adviser to the government and medical insurance companies.
He believes that rather than a physical disease being at the heart of ME, the sufferers are merely self obsessed hyperchondriacs and any self respecting Dr would be disgusted with them. He encourages the government not to take ME as a serious disease on this basis.
This has led to a lot of stigma around the illness and very few services, treatments or biomedical research.
Here are a few case stories
Ean Procter;
In 1988, a formerly healthy 12 year old boy named Ean Proctor from the Isle of Man had been suffering from ME since the autumn of 1986; his symptoms included total exhaustion, feeling extremely ill, abdominal pain, persistent nausea, drenching sweats, headaches, recurrent sore throat, heightened sensitivity to noise and light and loss of balance; he was also dragging his right leg. In 1987 his condition had rapidly deteriorated; he had gradually (not suddenly as may occur in hysterical disorders) lost his speech and was almost completely paralysed (which lasted for two years). He had been seen by Dr Morgan-Hughes, a senior consultant neurologist at the National Hospital in London, who had reaffirmed the diagnosis of ME and advised the parents that ME patients usually respond poorly to exercise until their muscle strength begins to improve; he also advised that drugs could make the situation worse.
Although he did not obtain his MRCPsych until 1986, during one visit by the Proctors to the National Hospital in 1988, Wessely (then a Senior Registrar in Psychiatry) entered the room and asked Ean’s parents if he could become involved in his case; desperate for any help, they readily agreed. Wessely soon informed them that children do not get ME, and unknown to them, on 3 June 1988 he wrote to the Principal Social Worker at Douglas, Isle of Man (Mrs Jean Manson) that “Ean presented with a history of an ability (sic) to use any muscle group which amounted to a paraplegia, together with elective mutatism (sic). I did not perform a physical examination but was told that there was no evidence of any physical pathology…I was in no doubt that the primary problem was psychiatric (and) that his apparent illness was out of all proportion to the original cause. I feel that Ean’s parents are very over involved in his care. I have considerable experience in the subject of ‘myalgic encephalomyelitis’ and am absolutely certain that it did not apply to Ean. I feel that Ean needs a long period of rehabilitation (which) will involve separation from his parents, providing an escape from his “ill” world. For this reason, I support the application made by your department for wardship”.
On 10 June 1988 Wessely provided another report on Ean Proctor for Messrs Simcocks & Co, Solicitors for the Child Care Department on the Isle of Man. Although Wessely had never once interviewed or examined the child, he wrote “I did not order any investigations….Ean cannot be suffering from any primary organic illness, be it myalgic encephalomyelitis or any other. Ean has a primary psychological illness causing him to become mute and immobile. Ean requires skilled rehabilitation to regain lost function. I therefore support the efforts being made to ensure Ean receives appropriate treatment”. Under his signature, Wessely wrote “Approved under Section 12, Mental Health Act 1983”.
In that same month (June 1988), without ever having spoken to his parents, social workers supported by psychiatrists and armed with a Court Order specially signed by a magistrate on a Sunday, removed the child under police presence from his distraught and disbelieving parents and placed him into “care” because psychiatrists believed his illness was psychological and was being maintained by an “over-protective mother”. Everything possible was done to censor communication between the child and his parents, who did not even know if their son knew why they were not allowed to visit him.
In this “care”, the sick child was forcibly thrown into a hospital swimming pool with no floating aids because psychiatrists wanted to prove that he could use his limbs and that he would be forced to do so to save himself from drowning. He could not save himself and sank to the bottom of the pool. The terrified child was also dragged out of the hospital ward and taken on a ghost train because psychiatrists were determined to prove that he could speak and they believed he would cry out in fear and panic and this would prove them right. Another part of this “care” included keeping the boy alone in a side-ward and leaving him intentionally unattended for over seven hours at a time with no means of communication because the call bell had been deliberately disconnected.
The side-ward was next to the lavatories and the staff believed he would take himself to the lavatory when he was desperate enough. He was unable to do so and wet himself but was left for many hours at a time sitting in urine-soaked clothes in a wet chair. Another part of the “care” involved the child being raced in his wheelchair up and down corridors by a male nurse who would stop abruptly without warning, supposedly to make the boy hold on to the chair sides to prevent himself from being tipped out; he was unable to do so and was projected out of the wheelchair onto the floor, which on one occasion resulted in injury to his back. This was regarded as a huge joke by the staff.
In a further medical report dated 5th August 1988 for Messrs Simcocks, Wessely expressed a diametric opinion from that of Dr Morgan-Hughes, writing: “ A label does not matter so long as the correct treatment is instituted. It may assist the Court to point out that I am the co-author of several scientific papers concerning the topic of “ME”….I have considerable experience of both (it) and child and adult psychiatry (and) submit that mutism cannot occur (in ME). I disagree that active rehabilitation should wait until recovery has taken place, and submit that recovery will not occur until such rehabilitation has commenced……..it may help the Court to emphasise that…active management, which takes both a physical and psychological approach, is the most successful treatment available. It is now in everyone’s interests that rehabilitation proceeds as quickly as possible. I am sure that everyone, including Ean, is now anxious for a way out of this dilemma with dignity”.
Ean Proctor was kept in “care” and away from his parents for over five months.Sophia Mirza;
Sophia died under very distressing circumstances on Nov 25th 2005. She showed all the classic signs of classic ME( hypersensitivity, muteness, severe pain, food allergys) but was sectioned in a mental health hospital against her will, under the mental health act, for two weeks in July 2003. This was due to the Drs blaming her Mother, Criona Wilson, for causing her condition. Her mother, quite rightly, blames her incarnation there for worsening her symptoms and subsequent death. Upon her death a autopsy was carried out. At first her cause of death could not be determined. Thanks to Simon Lawrence her spinal cord was taken away for research by Dr Chaudhuri and Dr O’Donovan which discovered unequivocal inflammatory changes affecting the special nerve cell collections (dorsal root ganglia) that are the gateways (or station) for all sensations going to the brain through the spinal cord. The changes of dorsal root ganglionitis seen in 75% of Sophia‘s spinal cord were very similar to that seen during active infection by herpes viruses (such as shingles). The cause of death was however determined as acute anuric renal failure. The other symptoms were classed as the secondry reason of death. However I think the inflammatory changes are a more significant contributing factor in her death, as I explained in a Nov post, that is the meaning of 'Myalgic Encephalomyelitis'. The cause of her illness certainly had nothing to do with her mothers handling of her.
You can find out more at her website http://www.sophiaandme.org.uk/
Libby Meyers;
Libby Meyers, 62, is in a nursing home in Charlton Down near Dorchester but her family want her to be treated at a specialist NHS centre, the Chronic Fatuige Syndrome unit at Queens hospital in Romford in Essex. Her husband and daughter have appealed three times but their applications have been rejected by NHS Dorset.
Mrs Meyers' husband Hugh, from Stratton near Dorchester, said his wife had simply been "abandoned" with no NHS treatment since 2007. Her bed in the Chestnut Nursing Home is being paid for by the family. Their third appeal against NHS Dorset's decision not to fund treatment in Essex was turned down recently and they now have no further right to appeal. Her husband says "She's had assessments [by local NHS] and they've all said 'sorry, she's too severely ill and we've got nothing that can help her. It may be expensive to send her to Essex but the cost implications of a woman of 62, who could probably survive in horrendous conditions for another 20 years, it doesn't make sense."
Their daughter Fiona Meyers says "They've left mum to rot in a nursing home.
Tuesday, 4 January 2011
Suspension
Hi all, happy new year :). Below are photos of the Foggy friends atc (artist trading card) swap specimens I received before Christmas
The above six are my favourite. Stupidly I forgot to take any photos of my own atc. My Grandma got me a load of card making stuff for my birthday, which is why I entered it, to use some of my stuff up.
A model areoplane my brother got for Christmas
I received a letter in the post the other day saying Dr Wight has mysteriously suspended his clinic for the forseeable future. Nobody has a clue why. Lots of people on Foggy friends are grumbling about it, many people rely on him a great deal. Hopefully the reason isn't too serious though so he'll be able to start practising again soon.
In the meantime we will just have to continue with the treatments alone. Its a shame from the tests point of view as I'll be unable to have those now. I probably won't even be able to find a Dr to retest my Mitochondria function to see if the Infra-red has improved it
However there are ME sufferers who take Naltrexone without a Drs supervision so at least I shall probably be able to carry on accessing it.
He has recommended Zolperdem Tartrate for my sleep problems which started again in early Nov and leave me feel really rubbish (shattered, sore eyes, painful fuzzy head). It is addictive though so I can only take it occasionally. My sleep has improved the last couple of weeks though. On Sunday night I tried cutting down to 3 Melatonin tablets rather than four but slept badly again, felt very yucky, so have gone back to the original doseage. Its a pity that sleeping pills are the only thing that makes a significant difference to my sleep. I've tried cutting down on rests in case I'm underdoing it, getting fresh air and practising yoga every day but nothing like that works.
I managed to have a lovely Christmas and New year despite everything. On New years day we went out to lunch at Ickwork house, which as you can guess from the pic was delightful;
Saturday, 18 December 2010
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
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
Thursday, 16 December 2010
'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;
Some dreams for my future;
- Volunteer for Suffolk Wildlife Trust or/and The Amateur Entomology society
- Go to university to study some kind of Life science
- Graduate and work as a freelance ecologist/zoologist/environmental campaigner
- travel in Canada, South America and New Zealand (Ben, my brother and Hannah, his girlfriend are going to South America next year, lucky things!)
- Swim, sail, dive, bike and Mambo dance
- 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!
Saturday, 11 December 2010
'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 :)
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 :)
Monday, 6 December 2010
The Hummingbirds severity guide to ME
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%.
Tuesday, 30 November 2010
Memories, bad dreams and changing names
This is my 2nd blog and my 1st blog entry on this new one 'Space of a ME guinea pig'. No doubt you'll be wondering why I've bothered to go through all the hassle of setting up a completely new blog just to change its name. There are two reasons;
1. I hoped that a blog with more commonly used words would get more hits
2. I wanted to change the CFS/PVFS/ME to just ME
After many years I've decided I like, on the whole, ME as the official name the best. The problem for a long time wasn't sure what the term Myalgic Encephalomyelitis means. Basically its a two words with five parts. My = muscle, Algic = pain, Encephalo = brain, Mye = spinal cord, Itis = inflammation. ME is the traditional name for the disease, being first used in 1956, whilst CFS wasn't used till sometime in the 70s/80s.
ME is a debilitating neurological disease initiated by a virus; an enterovirus. The 'ME' part of my condition was almost undoubtably caused by an enterovirus and was certainly pretty debilitating! I did suffer from neurological muscle pain as well. For a while I actually preferred the term PVFS because the condition is so often caused by a virus but now I've learnt that ME is also classed as a condition caused by a virus I've warmed to it.
I found out most of this from http://www.hfme.org/
I had no less than two bad dreams last night. The first one I can't remember; the second was a weird dream made up of memories of when I was little. A male district nurse was the main figure in it. He was very eccentric and dressed up as a teddy bear. The district nurses are two of the few people from those times that I remember with any degree of warmth though they were female.
Dr Wights tests have stirred up memories of those times for me, mostly not very happy ones. They have changed the way I remember them though; before my grief was always mixed up with guilt when I remember how ill I was. In spite of the fact my family and friends have always believed I was genuinely, physically ill there was always a small nagging part of me that held onto the abuse I'd been through and couldn't shake off the nagging doubt that I had had some control over my illness in some way. Since the tests and the recent research findings I've started to believe I was genuinely ill though and to regard it as just one of those bad experiences people go through in life. Like getting divorced or miscarrying or having cancer. Strangely thinking this has lessened my grief too
1. I hoped that a blog with more commonly used words would get more hits
2. I wanted to change the CFS/PVFS/ME to just ME
After many years I've decided I like, on the whole, ME as the official name the best. The problem for a long time wasn't sure what the term Myalgic Encephalomyelitis means. Basically its a two words with five parts. My = muscle, Algic = pain, Encephalo = brain, Mye = spinal cord, Itis = inflammation. ME is the traditional name for the disease, being first used in 1956, whilst CFS wasn't used till sometime in the 70s/80s.
ME is a debilitating neurological disease initiated by a virus; an enterovirus. The 'ME' part of my condition was almost undoubtably caused by an enterovirus and was certainly pretty debilitating! I did suffer from neurological muscle pain as well. For a while I actually preferred the term PVFS because the condition is so often caused by a virus but now I've learnt that ME is also classed as a condition caused by a virus I've warmed to it.
I found out most of this from http://www.hfme.org/
I had no less than two bad dreams last night. The first one I can't remember; the second was a weird dream made up of memories of when I was little. A male district nurse was the main figure in it. He was very eccentric and dressed up as a teddy bear. The district nurses are two of the few people from those times that I remember with any degree of warmth though they were female.
Dr Wights tests have stirred up memories of those times for me, mostly not very happy ones. They have changed the way I remember them though; before my grief was always mixed up with guilt when I remember how ill I was. In spite of the fact my family and friends have always believed I was genuinely, physically ill there was always a small nagging part of me that held onto the abuse I'd been through and couldn't shake off the nagging doubt that I had had some control over my illness in some way. Since the tests and the recent research findings I've started to believe I was genuinely ill though and to regard it as just one of those bad experiences people go through in life. Like getting divorced or miscarrying or having cancer. Strangely thinking this has lessened my grief too
Wednesday, 1 September 2010
Fwd: Infra-red sleeping bags and lots of lettuce
For those who are wondering what a infra-red sauna is and how it
works, the answer is I have no idea how it works. I'm only familiar
with infra-red as a tool for filming cuddly penquin colonys and cute
lion prides at night. I'v read one testimonial of a CFS sufferer who
had a toxin, Nitrosamine, blocking his mitochondria cells and he had a
60-70% reduction of the toxin after 6
months of using so I'm hopeful it'll wash it out.
A description of use;
I'v now had my infra-red coccoon for about a fortnight. Its like a
silver sleeping bag which covers you up to your neck. You have to heat
it up for 15 mins before using, and then snuggle down up to your neck.
I'v only used it 3 times for 2 mins each as I'm vy sensitive to it.
The first time I used it I nearly fell asleep whilest using it and
afterwards had a raging headache. Then I had a break of nearly a week
during which time I had a terrible tummy upset. The rolling around,
screaming in agony kind.The second time was much the same though not as
severe. The third time I
scarcely had a headache at all but instead had a curious pulsing
sensation of blood surging through my neck and head. I staggered out
of it after 2 minutes feeling vy weak as if I'd been doing strenuous
exercise. Apparently the infra-red does have a similar effect as a
workout. I always have to have a long lie down after using for over an
hour but they
reccomend this for users anyway, even for people without my ME related
problems with exercise. Its also crucial to drink 80ml for every 15
mins in the coccoon.
The support service offers advice on fitness and diet as well as using
the cocoon. They've recommended I go on a guinea pig diet of living
lettuce and sprouts and not so many carbs. Well, I guess, it makes the
Flintstones skip with excitment, why not me? The theory behind it is
that we eat more carbohydrates than we need, even that we're told to,
which makes our bodys too acid. We need to be more alkaline. This
could result in lack of energy as well as other problems like IBS
works, the answer is I have no idea how it works. I'm only familiar
with infra-red as a tool for filming cuddly penquin colonys and cute
lion prides at night. I'v read one testimonial of a CFS sufferer who
had a toxin, Nitrosamine, blocking his mitochondria cells and he had a
60-70% reduction of the toxin after 6
months of using so I'm hopeful it'll wash it out.
A description of use;
I'v now had my infra-red coccoon for about a fortnight. Its like a
silver sleeping bag which covers you up to your neck. You have to heat
it up for 15 mins before using, and then snuggle down up to your neck.
I'v only used it 3 times for 2 mins each as I'm vy sensitive to it.
The first time I used it I nearly fell asleep whilest using it and
afterwards had a raging headache. Then I had a break of nearly a week
during which time I had a terrible tummy upset. The rolling around,
screaming in agony kind.The second time was much the same though not as
severe. The third time I
scarcely had a headache at all but instead had a curious pulsing
sensation of blood surging through my neck and head. I staggered out
of it after 2 minutes feeling vy weak as if I'd been doing strenuous
exercise. Apparently the infra-red does have a similar effect as a
workout. I always have to have a long lie down after using for over an
hour but they
reccomend this for users anyway, even for people without my ME related
problems with exercise. Its also crucial to drink 80ml for every 15
mins in the coccoon.
the cocoon. They've recommended I go on a guinea pig diet of living
lettuce and sprouts and not so many carbs. Well, I guess, it makes the
Flintstones skip with excitment, why not me? The theory behind it is
that we eat more carbohydrates than we need, even that we're told to,
which makes our bodys too acid. We need to be more alkaline. This
could result in lack of energy as well as other problems like IBS
Saturday, 28 August 2010
shampoo
I've recently been diagnosed with glycolic acid ( from shampoo/hair products) on the translocating protiens of my mitochondria cells. This is very unusual; My new Dr who is an ME expert, miles away, and has tested many people had never seen it before. I thought it was a bit unfair; I only wash my hair twice a week, never use fake tan and rarely wear make up and I get to have this unusual weakness when the rest of my peers are smothering themselves with no side affects!
Stranger still I wouldn't have said fatuige was a major part of my CFS, I'd always scoffed at the idea of CFS being something to do with the mitochondria; I thought it must be something much more complicated. I'v relapsed since last Summer, not back to what I was like before that fortunately, but it affected my sleep badly. I got insommnia which then had an affect on my energy and concentration levels, I suffered from dizziness, headaches, lack of appetite, weakness and mild light and sound hypersensitivity. I wear ski sunglasses my Grandma kindly gave me all the time now and often have to have the voloume on my iPod dock right down
Basically what it means though is this is stopping me from tranferring energy round my body properly and fortunately there is a treatment that can help. Dr Wight got back in touch with the lab that did the tests as he'd never seen it before and they told him that infra-red saunas often helped people with such complaints.
So Mum got online. The 1st company she looked at were selling proper saunas and she got very excited at the thought of getting a double persons one and having sauna parties. But just as I was wondering how to put her off, she found another company selling cocoons (above link). Apart from the advantage that a cocoon would take up less space, this company also offered a support service so you could pay for advice
Stranger still I wouldn't have said fatuige was a major part of my CFS, I'd always scoffed at the idea of CFS being something to do with the mitochondria; I thought it must be something much more complicated. I'v relapsed since last Summer, not back to what I was like before that fortunately, but it affected my sleep badly. I got insommnia which then had an affect on my energy and concentration levels, I suffered from dizziness, headaches, lack of appetite, weakness and mild light and sound hypersensitivity. I wear ski sunglasses my Grandma kindly gave me all the time now and often have to have the voloume on my iPod dock right down
Basically what it means though is this is stopping me from tranferring energy round my body properly and fortunately there is a treatment that can help. Dr Wight got back in touch with the lab that did the tests as he'd never seen it before and they told him that infra-red saunas often helped people with such complaints.
So Mum got online. The 1st company she looked at were selling proper saunas and she got very excited at the thought of getting a double persons one and having sauna parties. But just as I was wondering how to put her off, she found another company selling cocoons (above link). Apart from the advantage that a cocoon would take up less space, this company also offered a support service so you could pay for advice
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