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?