Sunday, May 31, 2009

IACFS/ME 09 Conference: Lifestyle Management

Oh lord! I wish Dr. Carruthers were my doctor!

IACFS/ME 09 Conference: Lifestyle Management: "Dr. Carruthers believes pacing is an essential strategy because the ‘delayed and prolonged’ fatigue in ME/CFS is fundamentally different from the kind of fatigue found in other diseases. Putting them rather low on the ladder of his estimation, he noted that “even the authors of the NICE Guidelines ‘ are (finally) beginning to realize this but unfortunately they still don’t fully understand what this means.'

If I understand him correctly, ‘fatigue’ is part of a complex control system. When we’re too active and our bodies are beginning to suffer, fatigue sets in and causes us to reduce our activity levels. Of course we can override this fatigue command for a time with stimulants or by ignoring it, etc. but once the command is obeyed and we become inactive, the fatigue disappears rather quickly. It’s a very easily learned behavior pattern; do too much, suffer from fatigue; obey the fatigue signal, rest and quickly recover.

That pattern, of course, has just been shredded in ME/CFS. For one, the onset of fatigue is delayed - and what a problem that causes. You can engage in an activity and feel fine and then collapse hours or even days later. Not only that, but because the fatigue state is so prolonged, it’s difficult to tell cause and effect. Was it that activity three days ago or was it something yesterday that made my symptoms so bad today? Or was it because I overdid it three days ago that this minor activity I did yesterday triggered more fatigue today? (Throw in the fact that ‘fatigue’ itself impairs our ability to understand complicated situations and you can see how difficult it is for patients to know – particularly when they’re symptomatic – what has caused what."

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IACFS/ME 09 Conference: Lifestyle Management

Not before time!

IACFS/ME 09 Conference: Lifestyle Management: "Mind:Body? Or is it Body:Mind? In the beginning, behavioral therapists suggested that people with chronic fatigue syndrome differ little from healthy people in a physiological sense but that they’re quite different psychologically; they’re either too absorbed in their symptoms or they’re depressed or anxious - i.e., if you could just get them to stop focusing so much on their problems, they’d get well.

Dr. Jason appears to believe that those early CBT practitioners were putting the cart before the horse. Rather than the mind driving the body, it may be that the body is driving the mind. All those symptoms (that anxiety, that depression. . .) are what occur when patients transgress their physiological capabilities. His research is putting stress reduction therapies into a physiological context rather than a psychological one. Instead of suggesting that ME/CFS patients are mental basket cases he’s proposing that they’re rather courageous individuals (yes, he did say ‘courageous’) bucking up against an impaired physiology that greatly limits their choices.

He proposed that, instead of cycles of maladaptive behavior driving their limitations, there are actual physiological limits to what ME/CFS patients can achieve. Once they get outside of that activity ‘safety zone’ they encounter increased levels of oxidative stress, and neuroendocrine and immune problems that cause their symptoms to flare up again.

His thinking is clearly borne out by increasing evidence that if you push ME/CFS patients too far in any way – physically or psychologically – in the street or in the laboratory – their systems are going to behave abnormally....

...
Looked at in this light, instead of correcting patient's maladaptive thought patterns, cognitive behavioral therapies and other types of stress reduction approaches are doing nothing more than reducing stressful inputs and relieving the strain on an overworked system and allowing it to heal at least somewhat.

Don't Use It - Don't Lose It - The envelope theory is perfect for Dr. Jason’s studies. It relies on the idea that there’s only so much juice in a chronic fatigue syndrome patient's batteries. If you use that juice up it’s gone and needs to be built up again, but if you don’t use it up it can actually build up over time. In his study Dr. Jason had chronic fatigue syndrome patients use envelope theory techniques and recorded their symptom levels. His graphs vividly showed that as ME/CFS patients use up their energy their symptoms rise dramatically. On the other hand, when they were using the energy envelope techniques not only did their symptoms drop – dramatically – but over time their overall level of activity increased. Here was vivid evidence that lifestyle management techniques can pay off in improved health."

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Friday, May 29, 2009

WOW £13 home-test kit developed for ME

The Press Association: £13 home-test kit developed for ME: "Scientists have developed a £13 home-testing kit which they claim will help identify people suffering from myalgic encephalopathy (ME).

The urine test is based on the theory that the illness is strongly linked to certain bacteria and a build up of toxins in the body. Experts are divided on what exactly causes ME, which was dismissed as 'yuppie flu' in the 1980s.

At a conference in London, Professor Kenny de Meirleir, who works at the University of Brussels, discussed his theory.
He and fellow scientists have developed a simple urine test which they say identifies the presence of high levels of the chemical hydrogen sulphate.

This chemical builds up after antibiotic use or exposure to salmonella infection, and can occur when there is too much exposure to mercury, he said.
Prof de Meirleir's research has shown that around 90% of patients with ME also have an excess of the bacteria enterococcus and streptococcus, which he believes interacts with exposure to metals to produce hydrogen sulphate.

Prof de Meirleir, who treats between 3,000 and 4,000 ME patients a year, said his patients had been shown to excrete high quantities of the metals copper, mercury and nickel, possibly contracted through the environment or food.

Prof de Meirleir said his new test, produced by his company Protea Biopharma and available via its website from Monday, accurately shows whether an ME patient has high levels of hydrogen sulphate. The patient's urine turns a dark colour when mixed with a chemical agent in the test.
'This is a test for a major cause of ME,' he said. 'Anyone with a positive result should talk about it with their GP and get referred to a specialist.'
Copyright © 2009 The Press Association"

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Thursday, May 28, 2009

Treating Fibromyalgia Pain - an Organized Approach

Great advice as always..

Treating Fibromyalgia Pain - an Organized Approach: "Treating Fibromyalgia Pain — an Organized Approach
The FDA has recently (and for the first time) begun to approve medications for treating fibromyalgia pain. In the last year, the FDA has approved Lyrica, Cymbalta, and now Minalcipran. Although these medications can be helpful, and you will hear about them (each company will spend about $70 million per year advertising them), it is critical to remember that the key to pain relief is to use the 'SHINE Protocol' to eliminate the underlying causes of the pain. Pain is like the 'oil light on your dashboard' telling you that something urgently needs attention. By treating SHINE, you address:

Sleep
Hormonal support (despite normal lab tests)
Infections
Nutritional support, and
Exercise as able

Most of you will find that when you treat 'SHINE' your pain will go away, or at least markedly decrease. In the interim, or even long term in cases where we can't get to the root cause of the pain, pain medications can offer a lot of relief.

I highly recommend that you read his "detailed article which will take you through a step-by-step process to help you get pain free. It will review how to treat the underlying causes of the pain and how to use natural remedies for pain. It will also review how to use over a dozen pain medications (and the order in which to try them) so you can get pain relief while going after root causes of the pain."

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Wednesday, May 27, 2009

'Milestone' celebrated as ME document is sent to GPs - Scotsman.com News

'Milestone' celebrated as ME document is sent to GPs - Scotsman.com News: "FOR years it has been dismissed as 'yuppie flu', fuelling a perception that it has received little attention from doctors.

But campaigners for recognition of ME as a serious illness both in the medical world and among the general public are celebrating what they are branding a 'milestone' move.

Following pressure from an NHS Lothian study, the Scottish Government has ADVERTISEMENTcirculated a document to all GPs asking them to look more closely at the symptoms and treatment of the chronic illness, which causes extreme tiredness and pain.

It is another significant progression for the condition in Scotland and further abandons the idea that sufferers are merely lazy or behaving like hypochondriacs.

The Scottish Good Practice Statement on ME comes after an internal report by NHS Lothian which acknowledges ME – or chronic fatigue syndrome – has been neglected for years and related services are in desperate need of a shake-up.

In the document, GPs are told that ME causes "significant ill health and disability in a number of adults, young people and children".

Symptoms include unexplained fatigue, sleep dysfunction and pain, and that once these are evident for six months (three months for children), diagnosis can be made.

It adds that the quicker a diagnosis can be made, the less severe impact ME can have on a victim's life. Emotional support and counselling are also pushed in the document to give maximum support to the estimated 4,000 people in the Lothians who could be affected by ME.

A spokeswoman for Edinburgh ME Self-Help Group, which lobbies for improvements in medical and public awareness, said: "This is actually something of a milestone.

"Some people do have very good doctors, but there are still those who know little about the subject, and we are pleased it is moving in the right direction.

"The ultimate goal is to have ME considered alongside other long-term illnesses like MS and rheumatoid arthritis."

Public Health Minister Shona Robison said both the Lothian study and the new advice for GPs were very important pieces of work."

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Sunday, May 24, 2009

Epidemic Myalgic Encephalomyelitis: A Demand for Urgent Action and Accountability‏ - PlateletGal's Journal - MedHelp

Scandalous and no doubt a contirbuting factor to my rude, dismissive treatment whenever referred to hospital for tests etc

Epidemic Myalgic Encephalomyelitis: A Demand for Urgent Action and Accountability‏ - PlateletGal's Journal - MedHelp:

"The CDC has systematically failed its mission to protect the health of the global community with regard to the uncontrolled spread of the pandemic neurological and multiple systemic disease Myalgic Encephalomyelitis,to prevent the chronic lifelong disability, suffering and needless deaths ithas wreaked on the lives of millions of people around the world since the CDC became negatively involved with this infectious disease 25 years ago while in the midst of the AIDS pandemic. The CDC ignored the growing epidemics, theCheney/Peterson biomarkers and historical evidence by constructing CFS and pretending it was a new condition.

It has failed to educate the public about the 75 year epidemic history of M.E., to educate the medical profession with appropriate guidelines to care for the patients, to fund research and provide treatmentsfor the disease, and critically to ban blood donations and stop the spread ofthis disease. It has failed its mission and goals, denying the epidemics, focusing wrongly on fatigue and psychosocial factors, pursuing meaningless research studies, and subjecting sufferers to uninformed medical neglect andhuman rights abuses. Advising doctors not to do the very tests that wouldconfirm the disease? That is CDC policy.

It began with a botched investigation of a major outbreakof M.E. in a tourist village at Lake Tahoe, where the CDC ignored thebiomarkers found by Drs Cheney and Peterson which validated the disease, and continuing to the present day with its 25-year marketing exercise in rebranding this serious disease similar to M.S. and Post Polio Syndrome as CFS, renaming and redefining it as a vague fatigue state via the unscientific Fukuda and Holmes definitions and further reducing it to a �"

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Friday, May 08, 2009

Fibromyalgia and IBS flare up

Ho hum,

I thought I was just losing a bit of weight off my upper tum as it seemed to be getting smaller but yesterday it was a big as ever, swollen and tender plus rabbit dropping constipation so it looks like maybe the IBS is affecting my upper digestive track too...Oh poo!

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Thursday, May 07, 2009

When Doctors Don’t Know What’s Wrong « Happiness in this World

When Doctors Don’t Know What’s Wrong « Happiness in this World: "When Doctors Don’t Know What’s Wrong"

On Tuesday I had a mammogram and my breast ultra sound scanned at The Friarage just a week after reporting a lump to my GP, I had hoped she would say it was nothing to worry about but that was not be. Instead I got an urgent referral to the Scott Suite, an excellent breast clinic at The Friarage Hospital.

The doctor looked knackered but he listened - last time I was made to feel stupid for being concerned about my left breast starting to grow so much that was at least one cup size bigger! He said no-one is symetrical and it had probably always been like that, which was so not true. Indeed, it is now at least TWO cup sizes bigger...

So the doc sent me off for a mammogram, the staff were lovely, friendly and efficient, squeezing my boobs untill paper thin as tenderly as possible, trying to make sure they got all the breast tissue in. I was only flummoxed once when they thought I had had surgery?????

But then....I met her! The ultra sound scanner from hell! I thought I was going back to the doc but was taken to a small examination room with loads of surgical instruments laid out - I didnt have a clue what to expect next. Laid out on the examination table a door opened behind me and in she flounced saying "I am only doing this to reassure you", a phrase she must have repeated at lest 20 times.

Ordered to lie on my side then berated for not being in the exact position she wanted, the lubricant gel was slapped on and the scanner head roughly jabbed at and pushed around my already tender breast she barked "where is this lump?". I tried to put my fingers over it only to have my hand slapped away.

" I don't doubt that there is a lump" she said but it is nothing" so I had to ask "Well, what is the lump then?" Her answer? " How old are you? (50) It is because you are peri-menopausal" I tried to say but my last period was 4 or 5 years ago so I am surely post menopausal...but I was not allowed to finish my sentence as she interupted saying "if I knew why i would be a very rich woman, if i could find a cure..." as she flounced back out behind me.

I was gobstruck during all of this procedure - why as she being so rude and dismissive?

Then the article linked to above arrived in my inbox ( serendipity?) and reminded me to not take it all personally and to pity her and her anger.

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