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

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

My Mitochondria results

Well I have tested positive for all sorts of problems with my Mitochondria function. Great to have some explanations for my strange symptoms of sickness at last. I even told my Mum 'it was the best news I'd had in my entire life'. Dr Myhill sent us (and my GP) a letter explaining it all but its long and very complicated. I haven't even started reading it yet as reading isn't my strong point atm. However I will start by researching the basic facts about the Mitochondria and slowly build the picture up

One book that looks particularly set to help me with this is 'The biology coloring book'. It has several pages on its structure, how it works, the krebs cycle, etc. Interestingly the anatomy coloring book hasn't half as much info. Perhaps that explains why Drs generally know little about it?

You can buy it from Amazon
www.amazon.com/gp/aw/d/0064603075/ref=redir_mdp_mobile/177-4238557-7439756

Dr Myhill

I have been transferred to a new Dr, Dr Sarah Myhill. She is redoing my Mitochondria tests because apparently Dr Wight, for some odd reason, didn't test them for everything possible.

We finally arranged for the district nurses to come last Tuesday to do blood tests for a few things my local drs should have done 11 years ago and worst of all my Mitochondria ATTP profile.

What frightens me is it showing up clear, no abnormalities. Know that sounds daft but I feel so sick whenever any suggestion is made there is nothing biologically wrong with me. Like trapped. And the thought I could have somehow prevented my past 11 bad years is devestating.

Its daft because I've already had some mitochondria tests which showed abnormalities. Dr Myhill wasn't even bothered about doing this test but my parents wanted me have it to kinda prove to me I was ill

I wish I was mentally ill, least then I'd have a kinda condition. I hate this being niether

Petition; NO MORE psychiatric research into ME/CFS

What is this petition about?

 ME (myalgic encephalomyelitis) or, as the media and many doctors term it 'Chronic Fatigue Syndrome' (CFS), is a complex neurological condition leading to severe disability in many cases. About 250,000 people in the UK have this condition; up to 4 million in the USA and as many as 17 million worldwide.

 Why are we petitioning?

For 30 years, the UK and American research establishments have either refused to fund research into ME/CFS in any meaningful way, or consistently funded research by psychiatrists who believe that ME/CFS has a 'biopsychosocial' basis (ie that it is psychosomatic, or all in our heads) the same thing they used to tell patients with diabetes and MS.

As any ME patient can tell you, you only have to spend a week with this condition to know it is not imaginary. Some patients have lived for more than 30 years severely disabled, unable to move, speak, think clearly and participate in any of the activities that make life worthwhile. Nobody would want to live this life, because a life with ME is no life at all.

Despite monopolising Government research budgets, the psychiatrists have failed to prove that ME is a psychological (or 'biopsychosocial') condition, or that their suggested treatments are effective.

Worse, ME/CFS has become a dustbin diagnosis for patients with all kinds of illnesses where chronic fatigue is one of the symptoms. This means that, not only are real ME patients not getting research funding for causes and treatments, but those who are wrongly diagnosed are not getting appropriate treatment either.

What needs to happen?

While the UK and USA Governments, research and medical establishments continue to ignore the problem, scientists around the world have produced some 4,000 peer-reviewed, published scientific papers which show clearly that there are systemic, biological changes in the bodies of ME/CFS patients. This is the research direction that is most likely to lead to finding a cause - and a cure.

Who are we petitioning, and what do we want?

So far, every study funded by Britain's Medical Research Council (MRC) into this condition has had a psychiatic basis. It is time the MRC stopped funding psychological research into ME.

In January, the MRC announced %uFFFD1.5m funding for research into the causes of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME). Applications for funding must be made this June, and the MRC will make its decisions on which proposals to fund in November 2011. 

It is important that ALL of this funding  is focused onbiomedical research. It must not be wasted going over old ground or down any more blind alleys. It must capitalise on the work already done by such eminent scientists and physicians as Dr Jose Montoya of Stanford University, Dr Judy Mikovits of the WPI, Dr Harvey Alter at the NIH, Dr Nancy Klimas of the University of Miami, Dr Gwen Kennedy and her team at the University of Dundee and many others.

250,000 patients in Britain need to know they are no longer being ignored, sidelined or labelled as psychiatric cases. They need answers; they need treatments and they need them without any further delays.

ttp://www.thepetitionsite.com/1/no-more-psychiatric-research-into-mecfs/

Patryk

Patryk is my new physio treating my scoliosis. We are having sometrouble trying to teach him about my ME though. I'm sure he means wellbut its a difficult juggling act trying to manage two conditions with completely different treatment requirements; with Scoliosis yoursupposed to undergo extensive physio to correct the bone structurewhilest one of the basic symptoms of ME is a very negative responce to overexertion.

He was hoping that a gradual increase in exercise might actually help my ME as typically in ordinary people who are recovering from illness it does due to increased blood flow, etc. However in my long
experience of ME this is not the case for me!

We had trouble persuading him to do home visits at all as I'm not well enough for car drives atm. He didn't think he could do a proper job at my house. However we have managed to persuade and hopefully it'll only be tempory. I hope he is pleased with the little recommended exercises I have managed to do

The welfare of lab animals

Even if the XRMV scandal hasn't successfully proved anything about the cause and genuiness of ME (as furthur studies and reports keep saying the original study was faulty), it has certainly proven in my mind how inefficiant biomedical research using animals is.

a) Because of the risk of contamination
b) because of the risk of animal disease spreading to humans

The UK government is currently holding  a public consultation on how to implement a new EU Directive into UK law.

Not only is vivisection inefficiant if this  EU Directive was translated word for word into UK law it could lower lab animals welfare due to the fact the spefications of the directive are lower than current UK standards. To quote the RSPCA 'animals may undergo more suffering and pain, inhumane methods of killing may be allowed and many labs could go years without being inspected! We cannot let this happen!

The government could easily allow our higher standards to remain, however we believe they are cutting standards just to reduce regulation!'

Please voice your opinion on this important issue before 5th of September, even if you agree with vivisection!

http://webarchive.nationalarchives.gov.uk/+/http://www.homeoffice.gov.uk/documents/cons-2009-animals-research/

Emily's appeal

My name is Emily. I developed the neurological condition Myalgic Encephalomyelitis (ME) when I was 6 years old. In April 2011 I turned 30. I still have ME.

ME coloured every aspect of my childhood; it painfully restricted my teens and it completely destroyed my twenties. Now, as I move into the next decade of my life, I am more crippled than ever by this horrific disease.

My doctors tell me that I have been pushed to the greatest extremes of suffering that illness can ever push a person. I have come very close to dying on more than one occasion. If you met me you may well think I was about to die now - it's like that every single day. After all these years I still struggle to understand how it's possible to feel so ill so relentlessly.

My reaction to small exertions and sensory stimulation is extreme. Voices wafting up from downstairs, a brief doctor's visit, a little light, all can leave me with surging pain, on the verge of vomiting, struggling with each breath and feeling I'll go mad with the suffering. Of course it can also be as bad as this for no particular reason - and often is. I cannot be washed, cannot raise my head, cannot have company, cannot be lifted from bed, cannot look out of the window, cannot be touched, cannot watch television or listen to music - the list is long. ME has made my body an agonising prison.

My days and nights are filled with restless sleep interspersed with injections, needle changes (for a syringe driver), nappy changes (as well as experiencing transient paralysis and at times being blind and mute, I am doubly incontinent) and medicines/fluid being pumped into my stomach through a tube. My life could be better if I had a Hickman line (line which goes into a major vein and sits in the heart) for IV drugs and fluids, but such a thing would likely kill me. I'm on a huge cocktail of strong medications which help, yet still most days the suffering is incomprehensible. During the worst hours I may go without the extra morphine I need as I feel so ill that the thought of my mother coming near to administer it is intolerable - this despite pain levels so high that I hallucinate.

I live in constant fear of a crisis driving me into hospital; our hospitals have shown such lack of consideration for the special needs of patients like me that time spent in hospital is torture (eased only by the incredible kindness shown by some nurses and doctors) and invariably causes further deterioration.

Many days I feel utter despair.

But, unlike some sufferers, over the long years in which I've had severe ME (the illness began mildly and has taken a progressive course) I have at least had periods of respite from the absolute worst of it. During those periods I was still very ill, but it was possible to enjoy something of life. So in these dark days I know there is a real chance of better times ahead and that keeps me going.

My entire future, and the greatly improved health I so long for, however, currently hinges on luck alone. This is wrong. As I lie here, wishing and hoping and simply trying to survive, I (and the thousands like me - severe ME is not rare) should at least have the comfort of knowing that there are many, many well-funded scientists and doctors who are pulling out all the stops in the quest to find a treatment which may restore my health and that the NHS is doing all possible to care for me as I need to be cared for - but I don't. This wretched, ugly disease is made all the more so through the scandalous lack of research into its most severe form and the lack of necessary, appropriate support for those suffering from it. This is something that must change.

And that is why I tell my story; why I fight my painfully debilitated body to type this out on a smartphone one difficult sentence at a time and to make my appeal to governments, funders, medical experts and others:

Please put an end to the abandonment of people with severe ME and give us all real reason to hope."

By Emily Collingridge 2010-2011

You can support Emily and everyone with severe ME by joining the "Severe ME/CFS: A Guide to Living" Facebook group http://www.facebook.com/group.php?gid=114380158590669. Both sufferers and non sufferers welcome! See also www.severeME.info.

Newbies

I have a new laptop, a mac pro 2. Its very luxurious. So quiet like a sports car, and so fast. I particularly like the pages application. It comes with lots of handy templates and looks as if it will be very helpful for my campaigns. I'm also planning to write some novels with it. I also have a new cross roads lady. She comes once a month to help me look after my demented guinea pig while my parents go out. That I'm not so pleased about. I mean I don't mind her personally, she reminds me of a Eliza Dolittle song, just don't like feeling like a child or being reminded how disabled I am

Burst our bubble campaign

        www.investinme.org/IiME%20ME%20Awareness%20Burst%20Our%20Bubble.htm

Invest in ME are running a campaign this month (ME awareness month) called 'Burst our bubble'. The inspiration stems from the idea that ME sufferers live in a bubble. For more info see link

Goings on at number 6 Plummer Close

Since starting the LDN again I've begun to recover from my latest nausea-initated relapse. Afterwards I'd felt shattered, dizzy and full of fog; dry, flemghy mouth; unable to speak; hypersensitive to light and sound; headachy; and I even had some leg muscle pain which I haven't for years! Though it wasn't that bad and could have been due to cramp. Since the LDN though my dizziness, fog, tiredness and headache have improved. I've managed a little blogging, foruming and sewing, spoken a few words and sat in the garden.

I've lost a lot of weight and am struggling to put it back on again due to tiredness and my stomach has shrunk so I become full quickly. Its a struggle to eat even a normal amount to stay alive. Apparently if I continue the way I am my body will start turning my muscle into energy instead. So its important I maxamise every mouthful I take calorie-wise.

I've got to drink fortisips which are utterly revolting.




I've also been consuming a lot of stinging nettles!! I was advised to do so by a herbalist whom my Mum met at a workshop. (I intended to go, but was too ill, so my Mum went in my stead.) I have nettle and apple juice tonic for breakfast and nettle soup for tea. They're rich in many vits and minerals including A + C, potassium, iron, and calcium

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

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

Fwd: EU: 3 Days to Save Herbal Medicine!

---------- Forwarded message ----------
From: Ricken Patel - Avaaz.org <avaaz@avaaz.org>
Date: Thursday, April 28, 2011
Subject: EU: 3 Days to Save Herbal Medicine!
To: "6chestnuts@googlemail.com" <6chestnuts@googlemail.com>
Dear friends,

In 3 days, the EU will ban much of herbal medicine, pressing more of
us to take pharmaceutical drugs that drive the profits of big Pharma.
The EU Directive erects high barriers to any herbal remedy that hasn't
been on the market for 30 years -- including virtually all Chinese,
Ayurvedic, and African traditional medicine. It's a draconian move
that helps drug companies and ignores thousands of years of medical
knowledge.

We need a massive outcry against this. Together, our voices can press
the EU Commission to fix the directive, push our national governments
to refuse to implement it, and give legitimacy to a legal case before
the courts. Sign below, forward this email to everyone, and let's get
to 1 million voices to save herbal medicine:
http://www.avaaz.org/en/eu_herbal_medicine_ban/?vl

It's hard to believe, but if a child is sick, and there is a safe and
natural herbal remedy for that illness, it may be impossible to find
that remedy.
On May 1st the Directive will create major barriers to manufactured
herbal remedies, requiring enormous costs, years of effort, and
endless expert processes to get each and every product approved.
Pharmaceutical companies have the resources to jump through these
hoops but hundreds of small- and medium-sized herbal medicine
businesses, across Europe and worldwide, will go bust.
We can stop this. The directive has been passed in the shadows of the
bureaucracy, and it cannot stand under the light of democratic
scrutiny. The EU Commission can withdraw or amend it, and a court case
is currently challenging it to do so. If European citizens everywhere
come together now, it will give legitimacy to the legal case, and add
to growing pressure on the Commission. Sign below, and forward this
email to everyone:
http://www.avaaz.org/en/eu_herbal_medicine_ban/?vl

There are arguments for better regulation of natural medicine, but
this draconian directive harms the ability of Europeans to make safe
and healthy choices. Let's stand up for our health, and our right to
choose safe herbal medicine.
With hope and determination,
Ricken, Iain, Giulia, Benjamin, Alex, Alice, Pascal, Luis and the rest
of the Avaaz team.

SOURCES:
EU herbal medicines law set for legal challenge:
http://www.euractiv.com/en/health/eu-herbal-medicines-law-set-legal-challenge-news-503563
European Union directive to ban natural remedies in favor of pharmaceuticals:
http://www.allvoices.com/contributed-news/8826364-european-union-directive-to-ban-natural-remedies-in-favor-of-pharmaceuticals
Traditional Chinese medicine firms may face delisting in EU market:
http://english.peopledaily.com.cn/90001/90776/90883/7343301.html
EU crackdown on herbal 'remedies':
http://www.independent.ie/national-news/eu-crackdown-on-herbal-remedies-2628345.html

Please sign!

AYME; Craziness

The average ME sufferer might be forgiven for thinking that AYME (Association of young people with ME) seem to be living on a different planet to the rest of the ME community if they'd read their original statement on the PACE trial

'"AYME welcomes the findings of the PACE trial, the largest ever study of ME/CFS treatments. We hope it begins to increase patient confidence in GET and CBT when delivered by staff who are trained and experienced in dealing with the complexities of this condition. The study now needs to be replicated in children, and there is an urgent need for studies on the severely affected, who clearly cannot attend hospital. PACE assessed the safety and effectiveness of four separate treatments over five years with 640 ME/CFS patients from England and Scotland and found that graded exercise therapy and cognitive behavioural therapy were the most effective treatments for ME/CFS. AYME's Chief Executive Mary-Jane Willows said: "These treatments should be made available to all patients who are able to attend hospital and must be delivered by professionals appropriately skilled and qualified in managing ME/CFS. The crime is that only 25 per cent of children in England alone can access a specialist service, and these are now under serious threat of being cut, if not closed. Unless we fight for these services the results of the PACE trial will be meaningless." “Now is the time for all charities and patients to fight together. We must save existing services and campaign for specialist ME/CFS services across the UK and outreach services for the severely affected.”
This was posted on the 18th of Feb 2011.

There was major outrage amongst their members, most of whom had found CBT & GET ineffective at best and harmful at worst. A thread was started on their message board by a member calling for a boycott of the charity and many dissapointed messages were posted by others. However Mary Jane Willow insisted on defending their statement.

On the 22nd their statement was changed to this;

 "AYME supports any well conducted study that aims to help us understand more about possible treatment options. The findings in this study may not be true in children or young people under 18. There is a need for more research into effective treatments for children and young people and AYME is campaigning for this. Currently 75% of children and young people in the UK do not have access to any ME/CFS specialist medical treatment. AYME is fighting to save these existing services, and for outreach services for the severely affected."
I used to have access to a very helpful outreach service but since 2007 they haven't had a consultant. My parents sorely miss the support of one though I'm not so bothered

I'm worried by how the PACE trial will inform future treatment guidelines. Niether CBT, nor GET are strictly treatments; they don't improve ME sufferers physical health in the slightest. CBT might be helpful in a few cases where sufferers get 'stuck', but I regard GET as pratically a dangerous treatment for ME. It is a very strange recommended treatment for a condition that causes terrible post-exertional fatuige and cardiac abnormalities. (Being unable to raise your heart beat during exercise). Where does LDN, Infra-red saunas and regular rest periods fit in with those treatments?

A few other things about PACE that annoy me;

1. Sufferers who took part were only seen by a docter 4 times over a 12 month period
2. Only those well enough to attend a specialist clinic, as AYME have proudly admitted only makes up 25% of people, were able to take part. Also anyone with neurological symptoms were not allowed to take part
3. Judging a persons state of health by their mood and how far they can walk in six mins seems rather strange

It is a shame all that public money wasted for nothing.

My Mum is also dissapointed by how AYME has changed. It originally started to give young people with ME a voice in society but now they seem to have got into bed with the idiots

A petition has been set up by a group of people who call themselves 'The CFS resistance' asking AYME to denounce their statement. (Well two petitions actually, one asking them just to denounce what they've said on PACE and another to change their attitudes towards both PACE and SMILE trial but I'll go into more details on the SMILE trial later). I have signed the first, this is what I put;

'I've been badly mentally damaged by therapies similar to GET, CBT and the overwhelming attitude towards ME to the extent I'm afraid to confess to toothache in case it is simply 'all in my mind' and I feel I'm two seperate people.

However I lately found out part of my ME is caused by Mitochondria failure and am now improving, thanks to LDN (low dose naltrexone) and infra-red saunas

I long ago left AYME because I didn't feel they wanted to recognise my ME. I'm still only 19'

I should probably have put 'I long ago left AYME because I felt they failed to recognise my ME' but I was rather tired at the time

If there is one thing I'd like to change about the world...

it'd be to give science back its integrity. Science should be about precise facts, not something you can twist and warp to fit yourself as the government so often seems to do with its own funded research.

It is the same with both enviromental and medical government funded research. Government twists the data untill it fits their attitudes and budget

A quote from 'British wildlife';

" 'New chemical element discovered'

Defra scientists are proud to announce the discovery of a super-heavy element called Governmentium (Gm). Though inflated and obese, the thing is held together by vast numbers of sticky particles known as morons. Governmentiums mass increases over time, during which it reorganises itself regularly to form isodopes. Eventually it reaches what is known as a 'critical morass', but fortunately nothing happens. Governmentium is completely inert

Teeth and bones

I'm currently recovering from a tooth infection. It was caused by a hole in my tooth according to my dentist. It was the first time I'd seen him in eleven years and, I'm pleased to report, all my teeth are in very good condition considering with this one pain-in-the-neck (or more correctly tooth) exception. I have big, gappy ones which helps a lot!

One small piece of (not too chewy) food for thought for you all though. My dentist, when I went to see him was more sympathetic about my ME than any of my GPs are or have ever been. Don't you think that is odd? My Dad says its probably because you pay to see a dentist so they're more charming towards you to attract more customers like a business, though he also added that Mr Little is a particularly able one. If you don't like them you can go somewhere else. Drs will get paid regardless of how many patients they have or how they treat them so don't have as much incentive to be decent. What does that say about our health service?

Examples of their helpfulness; he arranged to have the appointment in the hygienists room downstairs so I didn't have to struggle with the two flights of stairs; came out to greet us while we were waiting and assured they'd get round to us as soon as possible; asked me if there was anything that frightened me; also about my benefits if I qualified for a free visit which I didn't; kept up a constant stream of chatter like a comedians patter the whole time; said how my was my ME, and it was lovely to see me after all this time

It  almost made it worth having toothache for a week! It was pretty awful though, much worse than it looked as it was inside my tooth. He was very cautious about giving me antibiotics but, after a couple of sleepless night and foodless days, I eventually succumbed to them and am still living with the consequences. It also left me feeling very drained.

The one good thing is that they can fill it in (or the cheaper option, remove it) so I don't have to endure it again. Second good thing the ff 'News, Views, Campaigns and Petitions forum has reopened under the watchful eyes of my gd friend Firestormm and the equally lovely Cahzz who I mentioned in my last post. Thank you so much fire for persauding them!

What do you think of my new background? It is one of my pics   

Statements on the PACE trials

The two biggest medical trials funded by the MRC atm are the FINE and PACE trials.

According to the website the PACE trial is 'the first 'large-scale trial in the world to test and compare the effectiveness of four of the main treatments currently available for people suffering from chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME)'

These are, also quoted from their website;

'

• Standardised specialist medical care. This is the most common treatment for CFS/ME. Specialist doctors can give an explanation of why participants are ill and general advice about managing the illness. They may also prescribe medicines to help with troublesome symptoms such as insomnia and pain, or advise GPs on what medicine is appropriate. If a participant is randomised to this treatment alone, they are encouraged to use specific self-help management that make most sense to them.   .
• Adaptive pacing therapy. This therapy is about carefully matching activity levels to the amount of energy available. Therapists work with participants in this treatment group to help monitor activity and symptoms, aiming to improve quality of life and create the best conditions for a natural recovery.
• Cognitive behaviour therapy. This therapy is about examining how thoughts, behaviour and CFS/ME symptoms interact with each other. Between therapy sessions, participants in this treatment group are encouraged to try out new ways of coping with their illness.
• Graded exercise therapy. This is about gradually increasing physical activity to improve fitness and get the body used to activity again. A therapist helps participants in this treatment group to work out a basic activity routine and slowly build up the amount of exercise as fitness increases.

I'm dissapointed they're not doing proper biomedical research so they could develop a drug or something. Its very difficult, if not impossible to manage your symptoms using these therapies

Another quote I don't like;

' No responsibility is accepted by the authors for the application of treatments described in these manuals outside of the PACE trial.'

The apparent results;

“We affirm that cognitive behaviour therapy and graded exercise therapy are moderately effective outpatient treatments for chronic fatigue syndrome when added to specialist medical care, as compared with adaptive pacing therapy or specialist medical care alone. Findings from PACE also allow the following interpretations: adaptive pacing therapy added to specialist medical care is no more effective than specialist medical care alone; our findings apply to patients with differently defined chronic fatigue syndrome and myalgic encephalomyelitis (ME) whose main symptom is fatigue; and all four treatments tested are safe.”

In a linked *Comment*, Dr Gijs Bleijenberg, and Dr Hans Knoop, Expert Centre for Chronic Fatigue, Radboud University NijmegenMedical Centre, Netherlands, say: “The central role of cognition in relation to fatigue might explain why graded exercise therapy is effectiveand adaptive pacing therapy is not.” They note that /in adaptive//pacing patients learn to focus on the fatigue in order to stop “in time”, which does not seem to help, while in graded exercise patients learn that they are able to do more than they thought possible

Statement on it from Invest in ME, a support group;

The PACE Trials have recently been published and demonstrate clearly what is wrong with the present way that vested interests have manipulated the establishment view about myalgic encephalomyelitis (ME/CFS) and forced tens of thousands of patients and their families to live in a continual state where no proper research is sanctioned, good science is denied and where pointless and biased studies are funded by a system which denies human rights.

Simple facts:

The Pace Trials cost nearly £5 million pounds of tax payers' money.

Patients were opposed to the trials right from the start due to patient selection criteria - save from two unrepresentative organisations who have taken money from the government in order to accept their policies toward ME.

ME is a distinct neurological illness and has been classified as such since the 1969 by the WHO in ICD10-G93.3. Fatigue Syndrome has its own classification in F48.

It is in none of the patient groups' interest in mixing these patient cohorts and trying to find a one size fits all management technique.

The purpose of any medical research should be the benefit of the patients and the PACE trials do not benefit ME patients but rather known vested interests who control what the media publish and what the Medical Research Council fund in relation to ME/CFS.

In recent years Invest in ME has been contacted more and more by patients or their carers asking for advice as the NICE guidelines recommendation of using CBT and GET has been forced upon them and patients have been bullied into activities beyond their limits.

This has led to some severe consequences such as suicide attempts but parents of children in such cases are often afraid of complaining due to fear of their children being taken into care.

We fear this is going to get worse now after these PACE trial results are being taken at face value.

How ironic it is that the Department of Health and the UK National Blood Services permanently prohibit people with ME/CFS from donating blood - their reasoning being that ME/CFS is a relapsing condition and this was to protect the health of patients. Yet now the message to the healthcare professionals from the PACE trials is that graded excercise and cognitive behaviour therapy are helpful - thus forcing vulnerable and physically ill people to risk further damage to their health.

By any measure the PACE trials are flawed and are not the result of proper research. Using diagnostic criteria which do not define patients with ME/CFS and which exclude people with neurological disorders means that patients participating in these trials were of a heterogeneous variety - thus making the results completely irrelevant.

This nullifies all of this study.

The PACE trials are designed, created and performed by those who view ME/CFS as a consequence of wrong illness beliefs or deconditioning.

The PACE trials are bogus science and have no relevance in the treatment of people suffering from myalgic encephalomyelitis.

All I want is to get better, is that so much to ask?

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

ME; latest debate and videos

I have three new videos on my 'Videos and slideshows' page now.



The above is about a recent debate in the Houses of Parliament, UK on . It was initiated by Ian Swales, Lib Dem MP for Redcar in Middlesborough. I've only watched five minutes of it so far, its rather long, but I agree with most of what was said in the snatch I watched. Ian Swales seems like a nice politition. However I don't agree that the government has improved their attitude towards ME since the Cheif Medical officers report in 2002. In fact, since the appearance of the NICE guidelines, I feel things have got worse for ME sufferers rather than better



The second is a video on some research which has found white blood cell damage indicating the body has been attacked by a virus. My ME, as I have mentioned, was started by a virus and I also showed signs of viral attack in my early blood tests but it was overlooked so I'm glad this abnormality has finally been recognised and documented



This is an edit of an earlier video I made, simply to raise awareness of ME and questions in peoples minds. The song is a charity single, written and played by my glamorous, talented friend Chlay, to raise money for the ME Association. You can buy it here http://chlay.blogspot.com/2010/09/darcy-joy.html . Follow the iTunes link or just donate!

I'll try to keep up with my blog during my studies but it'll be more difficult, so untill I'm back all keep yourself AWAP x

Writing on

I recently completed the 'Are you ready for science study?' quiz on the OU website. To my surprise, though I got all the maths questions correct first time, I struggled much more with the English ones. The English involved reading a piece of text and then answering questions on the content and picking the correct summarys. I've discovered I'm rubbish at summarising, its surpriseingly hard!

So I've been practising my English via the BBC skillwise website  http://www.bbc.co.uk/skillswise/words/grammar/

I've also wriiten an essay. The subject had to be your 'Ideal something' so I wrote about my ideal dream to emigrate to Canada

My Ideal place

Impressions;

My main impressions of Canada come from TV programmes and photos. Everything there seems to be wild, cold, vast and towering. Its fauna is magnificent, with the last roaming wolf packs being its chief attraction as well as beavers, bison, elk and bears. It also has a great variety of wildflowers. Unfortunately it is all under threat from habitat destruction and climate change

My reasons;

I’d like to emigrate there because I’m told its very clean and has a great outdoor culture which would suit me fine. I’d like to help preserve its unique wilderness as well.

The Canadian consensus document;

Canada is one of the few countries in the world that treat ME with the seriousness it deserves. They seem to be a very contempary people. The Canadian Consensus document is the best written and informed guidelines for diagnosing and treating ME in the world (I’ve just been reading it and it made me gasp, it was so good). Importantly they put a great deal of emphasis on mental and physical fatigue which worsens with exercise rather than just emphasising fatigue. Everyone gets fatigued. In comparison studies its been proven that people diagnosed according to the Canadian Consensus compared with other diagnostic criteria are far more physically impaired and have more neurocognitive and neurological symptoms. This also means physicians and health care providers take it much more seriously. My ME would be much better treated and viewed if I lived in Canada.

Btw what do people think of my new color scheme?

Hope your all AWAP :)    

OU funding

So I've finally got all my equipment ready to start next Sat. For this course I received a book and a DVD as my study materials from the OU, and have bought a bright yellow ( lovely color!) box file, three highlighter pens, a copy of 'The Good Study guide' and a book on lichen. I've been informed that they place a lot of emphasis on lichen in this course

I can't get any financial support for this course as you need to be studying 30 credits a year before you can apply. You get 10 credits for a Level 1 course so you'd need to be studying three a year or higher level courses to pass. I think there was some other catch but I can't remember what

The course involves five activities, mostly pratical which is good. Also you have to submit 10 Identifications to iSpot. At the end you have a assessment (EMA) which consists of a quiz and a 300 word essay on your field study

I'm already a member of iSpot, see link   http://www.ispot.org.uk/

Blue Ribbon Campaign for ME/CFS;We need to think of public concern first and our concerns second to with a Public Relations Fight

I read this on the Blue Ribbon campaign blog and found it of interest;

'We need Public Relations. That is going to be true today, tomorrow, and the day after the NIH study is published. Yes, it will get covered by the media. But then the study will fade away and the media will stop covering it. They will stop covering it because patients don't make any news for them to cover. The NIH study does not mean the messages we want to convey to the public will get there.

Public Relations for our disease is needed. It will be needed after the NIH study is published and after all subsequent  rumored positive papers are published. However, just because we have a message to give to the public does not mean they want to hear it.

If we want the public to hear us then we need to tell the public what matters to them, not what matters to us. This is what will make the public care what matters to us. 
 What matters to the public is what is newsworthy, and what affects their family, friends and neighbors. How can we ever hope to win the public to our side if we are only interested in talking about ourselves?

We can hook the public with several newsworthy facts that are about them. That is how we make the public care. Journalists care about newsworthy facts. Politicians care about what effects their polls, and their support from the public. The public cares about what influences their life, and the lives of their family and friends.

Here are some of those issues the public is going to care about:

1. CFS and its link to XMRV
2. How many healthy people may be walking around carrying XMRV (4% of the population, possibly 7% of the population if we go by the Alter slide)
3. Three countries have taken the precautionary measure of banning people with CFS from donating blood, but the U.S. has not. While a lot about XMRV is unknown, just as a precaution, the blood supply needs to be protected.

Now these things don't say anything about patient care,  problems with the CDC website,  problems with our name and diagnostic criteria.  Those are our concerns, and they are valid concerns.. But they cannot be addressed all at once, and nor will a public listen to it if they don't understand in the first place why it matters to them too.

In addressing the public, we must think first and foremost about their concern, rather than our own. We need to make ME/CFS matter to every part of society.  We can't do that while we're telling the public only what concerns us.

To illustrate my point, I would like you to think of this scenario. You turn on the tv, and there is an ad about purple disease. You've never heard of purple disease before. The commercial tells you there has been a fight about the name of purple disease, some want to call it blue, others yellow. Patients with purple disease want lots of things. They want recognition. They want help. They want money for research. They want drugs to fight purple disease.

How fast would you switch the channel? How does the fight about purple disease affect you? Do you care about purple disease research based on this ad? What does purple disease have to do with you and your family?  Why would you give a dollar or lift your finger during your busy life for something that does not touch your life in any way at all?

Now imagine a different scenario. You turn on the tv, and there is an ad for purple disease. You've never heard of purple disease before.  The commercial disease tells you what purple disease is, and that it's been highly associated with an infectious disease. You hear other countries are taking action to make sure that the public is not exposed to this disease through the blood supply.  You are told how many people may be carrying this infectious disease. You are told about outbreaks and stories about blood transfusions where people developed purple disease shortly after.  At the end of the commercial you are asked to go to a website to donate and learn more about purple disease.

Do you care about purple disease now? Do you see and feel how purple disease could affect your family without ever actually using the literal words? Without being told all the issues that concern patients, does it now concern you? And now that you're concerned that purple disease is a serious thing what are you going to do?  Hopefully, you are saying "yes, yes." and nodding as you read this. 

Yes, we need the public to care about us. We need the public to be on our side. We need the public to run for us, walk for us, donate to research, write letters to the government on our behalf. We need politicians to move mountains.

Please ask yourself, why would the public care about our concerns if we are not putting the concerns of the public first?

We only have seconds to reach the public, before they turn the page, before they turn the channel. We live in the age of the soundbyte. Where words and entire sentences are reduced to letters.  How fast do you stop looking at things that have nothing to do with you? How quick do you tune out from messages that are not thinking about your needs, or your life?

To get the public to care about us, we have to talk about their concerns as it relates to us first.

Those concerns are XMRV and the blood supply.'

 Andrea Martell
Blue Ribbon Campaign for M.E./CFS
 
Though I don't agree that the only concerns are XMRV and the blood supply, I do think we need public relations and need to think deeply about how we go about it. I think we need to raise awareness of its affect on society such as how much it costs the economy because of all the people unable to work, also how serious it can be such as it leading to organ failure, acute pain and the number of adult ME sufferers who are dependant on child carers.

I think because we are very keen to lose the image of 'lazy yuppies' we tend to concentrate a little too much on our acheivements in the media such as how we passed exams, raised money via skydiving or whatever and set up charities as a result of our experiences. Also we only seem to concentrate on the fatuige part of our disease because its meant to be the one symptom we all have in common without mentioning the pain, dizziness or loss of muscle function

Faced with all the problems and worthy causes in need of support in the world, I do wonder, if I had not suffered and knew this disease inside out wether ME research would be top of my causes to support?Probably not... Causes such as habitat destruction, climate change which endangers us all or AIDS in Africa which kills half the population. Still people do raise money for illnesses like MS and Anerexia which aren't so common...
What do others think?

Beggining studies with the OU

Ok, not the most imaginative title I know, but it does what it says on the tin as you might say. Its the first formal education I've attempted in 11 years unless you count the casual maths and English lessons my Mum has given me most week days since I was well enough. I've also been on some adult learning workshops run by Suffolk Wildlife Trusts. It was mostly due to these that prompted me to decide to try a OU course and which one.

The course I've chosen to start with is a short science one called 'Neighbourhood nature'. It is all about learning to identify and record the wildlife in your local area. I mainly chose it because it won't be all computer work. Also I enjoy watching nature such as the birds and butterflies in our back garden and visiting nature reserves but have never tried recording what I see before so thought it'd be useful to learn how to. Its run in partnership with OPAL and iSpot. I'm already a member of iSpot but have only submitted one record before so hopefully this course will force me to be a bit more dedicated.

Its meant to be very disabled friendly university as it is nearly all done from home so no travelling, having to negotiate awkward buildings and you can fit your learning around your own time. It asks on the registration form if you have a disability and if you ring 'yes' they automoatically send you a copy of their 'Meeting your needs' brochure detailing all their services for disabled people

Unfortunately even though I definitely said yes, some error occurred whilst it was being processed and they managed not to register this important detail. This meant my Mum had to phone up our local branch to correct them and ask for a copy of the brochure. Still it was very interesting when it did come. I'm now awaiting a comb-backed copy of my study book which hopefully will be easier to use lying down    

The LDN database

'Until there’s a cure, there’s LDN'

This is a quote from the LDN database.com website which I think is very fitting. I was recently directed to this online database by a helpful foggy friender called Luna. I am thinking of writing a letter to my MP lobbying for a clinical trial of LDN (though it'd be helpful if they developed a proper diagnosis for ME first). When I posted this on Foggy Friends Luna asked my why don't I join the group pushing for a clinical trial and to remember to fill in the form there stating how I felt LDN had helped me. 

The Graph for ME/CFS sufferers is very encouraging. Of the 22 people who have submitted info 16 found it helpful, 4 not sure and 2 nothing. You can view the graph here;

https://ldndatabase.dabbledb.com/page/other/vdDXrbBZ#

I've also joined the LDN yahoo group. Most of the other members have MS rather than ME but they sent me loads of Word documents stuffed with info on LDN. I'll include bits of the information on my blog as I read it 

If you are an ME sufferer on LDN follow this link to fill the form;  http://www.ldndatabase.com/questions.html

Foggy Friends have a chat room as well as forums. I've only just started to use the chat room, occasionally in the evenings, its nice to talk to some different people in 'real' time for a change. Foggy friends seems to be a very democratic ME website and there is a good mix of people  

Amy

Amy Smith is a nineteen year old girl whose passions in life are Irish coffee, reading and shoes (because as she says you can more easily find perfectly fitting shoes than clothes. Although alas that statement doesn't apply to me). She also happens to have been my best friend since I was two months old (she is two months younger).

She came to visit every Friday throughout every stage of my illness; during the years when I was in the dark, mute, underweight and unable to wash properly; the period when I was tube-fed and my Dad carried me downstairs every morning to my special 'day' room downstairs next to the guinea pigs; when I started to talk again; to recover enough to sit up and chat with her; eventually progressing to getting out of my room into the dining room. We would chat for about an hour and Mum would have made some home-made snack.
In September she went off to University in Reading so those times are now mostly a thing of the past except occasionally during the holidays. I do genuinely miss her. She was one of my few contacts with the outside world. Its so easy when your on your own-i-o all the time to get wrapped up in your own daft thoughts, to lose your grip on reality and let your problems grow untill they overpower you. Seeing someone else, even if you don't confide in them, puts your life into perspective. On your own its easy to lose that.

Amy is a proper friend as well; someone who knows you really well and will always remain a friend despite anything, whatever happens, if your naughty, you disagree on something or are terribly depressed. I mean I do have other people in my life, I have people I can text whom I've met on forums and a few other old schoolfriends. But they don't know me half as well and frequently I either feel I'm putting on an act or when I say what I really think they take it the wrong way and get offended. Espeically with my ME friends because I feel the problems I've encountered during my ME are generally ones my 'fellow' sufferers don't like to confront, also I've had a pretty severe, classic type that they don't all understand. Often lately I've felt are friendships are rather one-sided, they tell me their problems but I'm unable to tell them mine. I'm sorry if I'm sounding rather unkind

Amy went through my ME with me and understands better than anyone (apart from my parents) what I've been through.

Mary Bradley books; researching LDN furthur

 I've just finished reading this book about LDN. My Dad got it for me for Christmas. Its written by a woman called Mary Boyle Bradley whose husband suffers from Primary Progressive MS and has been on LDN for about nine year. This has happily stopped his MS from progressing. Her Uncle, Mum, herself and various friends also have been on it for conditions as wide ranging as cancer and Samters.

It was a good read from the perspective of learning about someone elses experiences of it and I learnt some interesting new facts about LDN.

She is a very uncritical woman which is both a blessing for the book and a slight negative. She isn't very zealous in her critisim of the MS charities and governments who don't champion LDN because they're in cahoots with the pharmaceutical companies. (I have to confess it was pleasant to discover ME charities aren't the only ones who let down their members because of their involvment with government agencies and pharmaceutical companies.) She believes the reason they aren't interested in peoples experiences or the Irish government with funding a large scale clinical trial of LDN because they think it sounds too good to be true.

Basically Naltrexone is an out of patent drug that was once used, at a higher dose of 50mg, to treat drug addicts and achololics. In 1986 a New York doctor, Dr Bernard Bihari, discovered that some of his drug abuse patients who were suffering from a mysterious disease later discovered to be AIDS benefited from a lower dose of this drug (4.5mg.

Breif quote from the low dose naltrexone.org website on how its supposed to work;

' A body of research over the past two decades has pointed repeatedly to one's own endorphin secretions (our internal opioids) as playing the central role in the beneficial orchestration of the immune system.  Preclinical evidence indicates overwhelmingly that opioids alter the development, differentiation, and function of immune cells, and that both innate and adaptive systems are affected. The brief blockade of opioid receptors between 2 a.m. and 4 a.m. that is caused by taking LDN at bedtime each night is believed to produce a prolonged up-regulation of vital elements of the immune system by causing an increase in endorphin and enkephalin production.'

However there have been few studies into LDN because drug trials are mainly initiated by large pharmaceutical companies who have to, in the interests of their businesses, keep the likely financial rewards in mind. As Naltrexone is a cheap drug that already has a patent the financial rewards would be few.

Mary Bradley attemped to lobby both the Irish (her home country) government and the South African government because MS, AIDS, etc and their treatment put a bigger pressure on those countries economys than they do on the Americans due to the NHS and the AIDS epidemics. However so far both governments have failed to act (probably because they are reliant on the drug companies).

I'm not sure exactly how LDN benefits ME sufferers as so little is known about ME at all, never mind the effects of drugs on it.

Onw disappointing point of the book is that the only CFS sufferer who took it(it didn't say ME) wasn't particularly improved by it and quickly gave up on it when she became pregnant. However her chronic fatigue was probably the result of her Samters, rather than classic ME. If we are to make any progress in the treatment of ME we desperately need a proper diagnosis for it. The problem with doing any research into it is that its diagnostic criteria is mostly phony so almost anyone suffering with anything could be thrown in. If someones fatigue was caused by say, a phyciatric problem, then LDN might not really help them. I've been asking on FF how many people would be interested in a clinical trial of LDN. The answer so far, 11 yes, 1 no, 3 not bothered. 

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!    

The Chrysalis

I've finally started to notice a real difference in my health which I think is due to the Low Dose Naltrexone (LDN). In case you've forgotten this is a drug Dr Wight prescribed in September. For a while I only noticed a few slight improvements in my well being, which could be have been due to any of my other treatments, not the Naltrexone at all. However since Christmas I've started to notice some real, huge changes which I think can only have been caused by the Naltrexone. I feel like a butterfly chrysalis that is just reforming and is about to break from its cocoon.

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;!

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.

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 5^th 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.