Monday, January 25, 2010

My update

Just when I think I have come to grips with living with CFS/ fibromyalgia it throws another flanker at me...around Christmas I thought I ad an eye infection but the antibiotic cream soothed a little but did not get rid of the stabbing itchy red eyes, gummy on the morning so back to my own GP who has prescribed fake tears... only a minor thing I know but it makes me feel and look grotty with permanent red glazed eyes.. add on waking with a visual migraine and it adds up to a downer start to the week. I had planned to try little decorating today, in 15 or 20 minute stints but migraleve will have to work miracles before that is possible...aaarrrgghhhhh

Saturday, January 16, 2010

January 2010 : ME Free For All

January 2010 : ME Free For All: "Is M.E. a genuine illness? poll in 'British experts say ME virus is a myth', Daily Mail, 6 January 2010 #10

Invest in ME is a UK charity which seeks to educate about Myalgic Encephalomyelitis (ME/CFS).

You have allowed a poll entitled, 'Do you think ME is a genuine illness?' to be set up on your web site at
which itself seems to have been initiated following the recent Imperial College research publication concerning the XMRV retrovirus (British experts say ME virus is a myth, Daily Mail, 6 January 2010).

This is a highly offensive action taken by your staff and does you no credit whatsoever. We would like to request that you remove this poll immediately.

There is no reason or sensible motive, apart from sensationalism, to promote such a poll. ME is recognised as a neurological illness by the World Health Organisation and by the UK government. Presumably you would not run such a poll for other illnesses such as cancer, diabetes, MS or Parkinson's?

Should you need to know the real situation with myalgic encephalomyelitis (ME) which exists then you are welcome to contact us. There are so many real issues surrounding the perception of ME by the media and promoted by vested interests in the establishment that it would be better if you were to concentrate on those.

The treatment of ME patients in the UK is a national scandal and your newspaper and its web component would perform a real public service, and perhaps attract more readers, if it exposed the people who seek to perpetuate the myth of ME as a somatoform illness.

Regarding the ICL research this has already been discredited by the Whittemore-Peterson Institute of Nevada (WPI), USA, who carried out the o"

January 2010 : ME Free For All

January 2010 : ME Free For All: "As an M.E. sufferer of over three years, I wish to protest most strongly at your promotion of a poll questioning the legitimacy of my illness (Is M.E. real?).

M.E. has been listed as a neurological disease by the World Health Organisation since 1969 and, as my diagnosis came from my GP, one would assume she knew what she was talking about and would not diagnose anybody with something that did not exist.

A year ago I lost my disability benefits solely because of the bias and misinformation held as `truths' by some doctors who work for the DWP - this was despite having physical tests results showing massive cell damage going on inside my body and providing irrefutable evidence of the physiological nature of my disease which is responsible for the overwhelming pain and fatigue from which I suffer."

"I have had CFS/ME for more than 14 years. It has destroyed everything - careers, relationships and taken me to the very edge of sanity.

I live a life of isolation, pain and exhaustion. Normal activities are off limits to me.

I have excrutiating pain under all of my skin like barbed wire.

Such has been its ferocity this year that I have seriously contemplated suicide.

That you should visit such a mischief-making poll
on people like myself is all the evidence that I need that our society is in trouble.

Your newspaper's disregard for the suffering of others is typical of the tabloid obsession with cheap thrills no matter what the cost.

Walk a mile in my shoes. Quite frankly you couldn't.

Yours faithfully
Adrian Bonds"

Daily Mail explain why they pulled their poll on whether ME is a genuine illness

Daily Mail explain why they pulled their poll on whether ME is a genuine illness: "The Daily Mail have apologised for their controversial website poll 'Do you think ME is a genuine illness?'. The poll – originally put up to accompany the paper's coverage of the XMRV debate – was pulled from the website after a huge outcry from many people with ME/CFS and a sustained email campaign from several Facebook pages.
In an email signed by assistant editor Charles Garside, the Daily Mail wrote:
'First of all, let me apologise sincerely for any offence that may have been caused.

'The poll to which you refer was posted by a junior member of staff of Mail Online in response to a story which questioned once again the causes of ME.

'As I am sure you are aware, there is still a great deal to learn about what lies behind the condition. However, I entirely accept that this is completely different from suggesting that the condition itself is not real, regardless of the cause.

'I am pleased to report that once the clumsy nature of the poll was drawn to more senior staff's attention it was immediately removed from the website.

'The Mail - both the paper and online - prides itself on its coverage of medical matters and has devoted much resource over the years into covering the search of the causes and a cure for ME. Rest assured that we will continue to do this and that its sufferers continue to enjoy our full sympathy and support.

'We do appreciate all feedback - whether positive or negative - and I am particularly grateful to you for taking the time and trouble to draw this to our attention.'"

Thursday, January 14, 2010

Feeling fluey

Yet gain I failed miserably to get two quality rests yesterday, in fact I didnt even manage one - what is blocking me?

As a result I was too tired to cook dinner so we both just had a tin of soup, usually try to avoid anything ready made but it was desperate. It was t'other halfs night to dad sit ( dad has severe dementia and P goes round two nights a week to supplement the carers services and try to proovide some quality time for him). I ust about managed to watch Emmerdale but was flat out on the settee when P got home about 8.30. Only woke a few times during the night ( thanks to Nortryptaline) but am still eye-crossingly tired this morning with hot flu like head...guess I really must get those rests in....

Wednesday, January 13, 2010

CFS & Fibromyalgia Rating Scale | CFIDS & Fibromyalgia Self-Help

CFS & Fibromyalgia Rating Scale | CFIDS & Fibromyalgia Self-Help: &

CFS & Fibromyalgia Rating Scale
100 Fully recovered. Normal activity level with no symptoms.
90 Normal activity level with mild symptoms at times.
80 Near normal activity level with some symptoms.
70 Able to work full time but with difficulty. Mostly mild symptoms.
60 Able to do about 6-7 hours of work a day. Mostly mild to moderate symptoms.
50 Able to do about 4-5 hours a day of work or similar activity at home. Daily rests required. Symptoms mostly moderate.
40 Able to leave house every day. Moderate symptoms on average. Able to do about 3-4 hours a day of work or activity like housework, shopping, using computer.
30 Able to leave house several times a week. Moderate to severe symptoms much of the time. Able to do about 2 hours a day of work at home or activity like housework, shopping, using computer.
20 Able to leave house once or twice a week. Moderate to severe symptoms. Able to concentrate for 1 hour or less per day.
10 Mostly bedridden. Severe symptoms.
0 Bedridden constantly. Unable to care for self.

Finding Your Energy Envelope, Part 1 | CFIDS & Fibromyalgia Self-Help

Finding Your Energy Envelope, Part 1 | CFIDS & Fibromyalgia Self-Help: "Finding Your Limits: A Quick Answer
If you would like a general idea of your limits, rate yourself on the CFS & Fibromyalgia Rating Scale. Most of the students in our course have rated themselves between 25 and 45 at the start of the course, but we have had people across almost the full range of the scale.

Doh, should have done this first...I come out as;

20 Able to leave house once or twice a week. Moderate to severe symptoms. Able to concentrate for 1 hour or less per day

Managing Your Energy Envelope | CFIDS & Fibromyalgia Self-Help

Managing Your Energy Envelope | CFIDS & Fibromyalgia Self-Help: "Managing Your Energy Envelope"

Feeling a little less tired today despite my attempts to rest and "manage my energy" being foiled by the builders making a huge racket. Flu like feeling and dry, scratchy red eyes much improved today. So will try using the Wii again but otherwise a quiet day planned..

Tuesday, January 12, 2010

New pacing regime for fibromyalgia

Not a great start, I fully intended to have a rest yesterday early afternoon but the the Wii fit & sports arrived so I just had to set it up nd then set up my profile and did the first assesment which reckoned I am two years older in Wii age than my real age..then I had to organise an online Asda shop and that was any chance of a rest out the window.

The result today?? Slept past the alarm which is usually a sign of a bad day to comme. I have full on brain fog, am eye-crossingly tired and every time I move my head I get lightening pains frm my crunchy neck up into my head.

So, off for 100% rest right now to see if that helps....

Monday, January 11, 2010

New Year new approach to pacing myself

I hope to avoid the cycle of feel good one day, do too much and crash for the rest of the week that I have been prone to.

I aim to follow the "manage your energy envelope" advice and get at least two proper rests a day which involves proper rest ie doing nothing, no TV, radio or reading for at least 15 minutes.

There is a Wii on its way so I hope to be able to also get back some muscle tone, I have tried walking, going to the gym etc but all have worsened my fbromyalgia symptoms, just getting to the gym with a kt bag proved too much!

I really also want to be less of a hermit but social activity is just so draining that that may take longer to achieve.

Updates to follow..

diagnosis of fibromyalgia

Still in the dark ages I guess...

Diagnosis and differential diagnosis of fibromyalgia.
Goldenberg DL.

Department of Rheumatology, Newton-Wellesley Hospital, Newton, Massachusetts 02462, USA.

Fibromyalgia is a chronic functional illness that presents with widespread musculoskeletal pain as well as a constellation of symptoms including fatigue, cognitive dysfunction, sleep difficulties, stiffness, anxiety, and depressed mood. The diagnosis of fibromyalgia, similar to other functional disorders, requires that organic diseases are not causing the symptoms. Systemic and rheumatic diseases can be ruled out by a patient history, physical examination, and laboratory investigations. Because there are no specific laboratory tests for fibromyalgia, the 1990 American College of Rheumatology (ACR) classification criteria have been used in clinical settings; however, they are not ideal for individual patient diagnosis. Clinicians should be aware of limitations inherent in using tender points in the diagnosis of fibromyalgia. The multiple symptoms of fibromyalgia often overlap with those of related disorders and may further complicate the diagnosis. One of the most challenging diagnostic dilemmas that clinicians face is distinguishing fibromyalgia from other central pain disorders (e.g., irritable bowel syndrome, chronic fatigue syndrome, migraine). Screening questions based on published criteria can be used as a first approach in diagnosing functional illnesses. Numerous studies report a higher prevalence of psychiatric disorders in patients with fibromyalgia. Therefore, a careful history and evaluation should be taken for the presence of primary mood disturbances. To date, there is no "gold standard" for diagnosing fibromyalgia. Until a better clinical case definition of fibromyalgia exists, all diagnostic criteria should be interpreted with caution, considered rudimentary, and subject to modification. (c) 2009 Elsevier Inc.

PMID: 19962492 [PubMed - in process]

Thursday, January 07, 2010

Official Statement from the Whittemore Peterson Institute Regarding UK Study

Official Statement from the Whittemore Peterson Institute Regarding UK Study

The Whittemore Peterson Institute (WPI) has reviewed the paper entitled “Failure to Detect the
Novel Retrovirus XMRV in Chronic Fatigue Syndrome.” This study did not duplicate the
rigorous scientific techniques used by WPI, the National Cancer Institute and the Cleveland
Clinic, therefore it cannot be considered a replication study nor can the results claim to be
anything other than a failure not just to detect XMRV, but also a failure to suggest meaningful results.

The scientific methods used by WPI are very exact and require specific techniques to ensure
accuracy. Differences in techniques employed by Erlwein et al. not only explain their failure to replicate the WPI study, but also render the conclusions meaningless. These differences
include, but are not limited to the following:

1) blood sample volumes and processing;
2) patient criteria/population differences;
3) number and type of tests done to assure accurate results, including white blood cell
4) use of a molecular plasmid control in water versus a positive blood sample; and
5) different primer sequences and amplification protocol used to find the virus, which
were not validated by a clinical control.

The WPI study was published after six months of rigorous review and three independent lab
confirmations, proving that contamination had not taken place and that infectious XMRV was
present in 67 percent of CFS patients diagnosed according to the Canadian and Fukuda criteria.
In contrast, this latest study was published online after only three days of review. Significant and critical questions remain as to the status of patient samples used in the UK study as those samples may have been confused with fatigued psychiatric patients, since the UK has relegated “CFS” patients to psychiatric care and not traditional medical practices.

Wednesday, January 06, 2010

XMRV research update

010603: "The U.S. Department of Health and Human Services Blood XMRV Scientific Research Working Group is conducting a rigorous study to detect XMRV. Multiple laboratories will standardize methods to optimize sensitive detection of XMRV proviral DNA and viral RNA and then, once methods are standardized, these same laboratories will test coded panels of blood samples obtained from healthy blood donors and CFS patients. We look forward to the results of this study and urge that it be completed expeditiously, especially in light of this report from the U.K. In the meantime, be prepared to read about more studies with conflicting findings. Rather than simply accept or dismiss new information, we will help make sense of why discrepant results occur.

Perhaps the most important statement in the PLoS ONE paper is the acknowledgement by this group of investigators that CFS is an incapacitating organic disease affecting millions of people worldwide. Once XMRV detection methods are optimized and made widely available, we encourage this group of researchers to take another look at XMRV as a possible explanation for the organic basis of CFS in the U.K."

Saturday, January 02, 2010

Response to the piece on NHS services for ME patients (The Argus, December 14

"Further to the piece on NHS services for ME patients (The Argus, December 14), in Sussex there are more than 6,000 adults and children affected by myalgic encephalopathy/ chronic fatigue syndrome, many of whom are virtually housebound.
ME is classified by the World Health Organisation as a neurological disorder and the National Institute for Health and Clinical Excellence has recently issued guidelines to the medical profession.
Most doctors these days recognise ME as a serious illness and do their best to treat and support patients.
However, the Primary Care Trusts of Sussex need to urgently provide funding to shore up and further develop the NHS Sussex-wide specialist service we help set up in 2005 and has dealt with more than 2,000 referrals. We can be reached on 01273 674828.
David Butler
Sussex ME/CFS Society
Robin Dene, Brighton"

ME treatment needs to improve

I should say so having had my last 20 years blighted by this illness with no proper diagnosis or integrated treatment whatsoever.

"By Siobhan Ryan »

It was once dismissed as nothing more than “yuppie flu” but over the years a greater understanding about the debilitating effects of ME has emerged.
The lives of many patients were left devastated by the disease as they struggled to cope with a whole range of symptoms ranging from extreme tiredness and lethargy to consistent pain and dizziness.
This was all up against a lack of knowledge and recognition from the medical profession and the general assumption that people should just “pull themselves together”.
But things have now changed significantly for the better.
ME is now recognised as a specific medical condition and NHS services specifically aimed at supporting and treating patients are now emerging across the country.
But according to the All-Party Parliamentary Group (APPG), chaired by Brighton Kemptown MP Des Turner, there is still plenty that needs to be done.
The group has recently published an interim report on its inquiry into the NHS services available.
Dr Turner said: “Currently, services offered to patients with ME or chronic fatigue syndrome (CFS) are patchy and we have heard of numerous cases where treatment has simply not been available to any adequate standard.
“This is confounded by delays in diagnosis and failings on the part of GPs to recognise the disease or diagnose it.
“We found unacceptable variation in provision between different health trusts, which needs to be addressed.”"