A different person

My older brother dropped by the house this morning. We hadn’t seen each other in over two months and he was taken by surprise:  “You’ve really lost weight – you’re almost a different person!”

I’m gradually getting used to my new body, which is both much slimmer and much healthier than last year’s model. Sometimes I think that I’ve been trapped in the wrong body for most of my life and getting diagnosed as fructose intolerant has been the answer to many previous problems.

After this long battle everything is getting easier. I now function at around 80% of where I think I should be for my age – compared to about 40% this time last year. I’m three months into my “gut healing” diet and a week into the pill-popping regime prescribed by my doctor. The only items of clothing that still fit are my socks. Not having worked for over three years my funds are a little low, so I can’t go out and replace my entire wardrobe as I’d love to. But I live in a swish part of town generously apportioned with charity (“opportunity”) shops where some careful searching finds me well-made and barely-worn clothes from up-market stores for just a few dollars. Clothes shopping for a size 10 “small” is so much fun – suddenly I look good in almost everything!

Federation Square, Melbourne: with Krispin Fernandes, visiting from Timor Leste.

Lyme Disease

I'm re-posting a post from Facebook because so many people with ME ("CFS") actually have something else, and very often that "something else" is Lyme Disease. Here's the post:

"I was dx'd with ME/CFS for 17 years before finding out I had Lyme, Bartonella and Babesia last November. Since being on treatment for the last 7 months, my life is returning! I am getting my life back after 17 years. My passion now is to ask all of my ME/CFS friends to consider getting retested for Lyme Disease. Even if you had tests and they were negative (mine was three times from 1993-2004), and/or even if you cannot recall being bit by a tick, or think you cant have it because you don't live in a "Lyme" state.


The usual test given (the ELISA test) to test for Lyme is 50-59% wrong Always. You need to get a western blot test at a reputable Lyme lab to accurately test you. I can help you with this with resource on Push Pin Angels.

This is my story that starts when I first found out I was Lyme positive till this week. I pray you all consider getting re-tested. There is a page on the web site above entitled "first things first..." that describes the process of getting retested, and answers your immediate questions.

Remember that Dr. Mikovits reported that of the ME/CFS patients she tested for XMRV, 40% had Lyme as well. And there are two other studies now reporting that so many ME/CFS sufferers are testing positive for Lyme.

Please consider getting retested? Thank you for reading this!"

Doing Well

I’ve now had my third visit to the “CFS Discovery” clinic here in Melbourne – an odd name, but a fortunate discovery for me. Three months into my “detox” diet, initiated following a diagnosis of fructose intolerance by the clinic, I am doing well. In fact I’m doing far better than I ever expected, and I’m enormously grateful that this clinic exists. The doctors, nurses, and other clinic staff are terrific – professional, competent, thorough, and friendly. Following additional tests my diagnosis of “ME/CFS” has been confirmed using the Canadian Consensus Criteria. (A word here: the clinic uses the CCC and not the stricter Nightingale definition of ME; the clinic also uses the term “CFS”, however they treat the disease on a strictly biological/physical basis.) I will give further details of my diagnosis and test results in a later post. At the moment I’m still reading through the results and information given me by the clinic, and organizing all the medicines and supplements that have been prescribed.

Physically I’m now able to go out most days. I can attend meetings and classes (I’m taking a Spanish evening class), and can once again enjoy sitting in a restaurant or café (I can’t actually consume anything they offer, but my extreme noise sensitivity is gone) talking to friends. I can go for a walk or wander around the shops for one to two hours. I frequently skip my afternoon rest, and I sleep 7 – 8 hours a night. I must still stay within my limits – when I try to do too much (a yoga class, too much socializing) then I need more rest and the brain fog/general malaise returns. I am still sick, but the difference between now and a year ago is huge.  I have added a range of vitamins and supplements to my diet, but haven’t yet begun taking prescription medication (soon to begin). It is clear that in my case at least, the fructose intolerance (and possibly also celiac disease) is a key factor in my illness. I advise anyone and everyone with any kind of “mystery” ailment to get tested for food intolerances, fructose and lactose malabsorption, and to test for celiac disease. These problems remain unrecognized and under-diagnosed. 

Melbourne city center: after losing another 3kg since April, my once too-tight clothes are now looking decidedly baggy!

More notes on healing

I've now been on my leaky gut healing diet for 3 weeks (no fructose, no gluten, no processed carbs, no grains, no sugar/sweetener of any kind, no legumes, no nightshades, no nuts, no dairy, no fruit, no spices) and I was on a less limited but still strict diet for about a month before that. I find it easy to stick to - my cravings have all disappeared, and I don't feel particularly hungry. I eat 3 meals and a couple of snacks a day. It's easy to manage as long as I eat at home. In fact, it makes my life much simpler and easier. I eat a lot of protein (chicken, beef) which makes it satisfying, along with plenty of fresh vegetables cooked with olive oil. My snack food is a cooked mixture of quinoa with sunflower, pumpkin, sesame and chia seeds. I drink decaf tea with rice milk, and plenty of water.

I've been gradually feeling better, but the big difference kicked in about 5 days ago - and it's a huge difference. My brain fog is almost entirely gone - not totally, but close to it. I feel like I have my brain back - I can think clearly again, and that's wonderful! My dizziness and orthostatic intolerance have gone, the lethargy has gone. The 'general malaise' - just feeling sick so much of the time - has gone. My energy is up about 15% - 20% - I hope this will improve, but I'm not yet taking any kind of supplements at all, so I'm happy with what I have so far.

My noise sensitivity has improved, though not entirely disappeared. I’m still sensitive to sun. My stomach issues are much improved - no more bloating and gas, regular BM. Still have slight indigestion at times. Mouth ulcers have gone. Generally better able to deal with stress (still some work to be done, but it's improved). My mood has noticeably improved since I stopped eating fructose. I lost 8kg (17 lbs) between Nov-Feb, and have lost a further 5kg (11 lbs) since Feb – the weight loss was needed and is welcome. I feel much better for it.

I still feel very stiff and achy when I get up in the morning – no, it’s not age! My 86-year old mother doesn’t feel this. I still get some brain fog when tired, when talking to people or in a noisy environment. I still have some noise sensitivity, and can still get quickly unnerved in certain situations with only a little more stress than usual. I’m still resting in the afternoons, and still limiting my exercise. I still have some concentration problems, especially when reading; I still have an issue with temperature control – either feeling too hot or too cold very quickly.

I have tested positive for fructose malabsorption. My serological test for celiac disease was negative, but since doing the test my sister was diagnosed positive using the genetic test, so I am now having that done. It is possible to have both ME and celiac disease.

I tested negative on lactose malabsorption and IgG food antibodies – however I have heard that many people with ME (“CFS”) test positive on these. I’ve been diagnosed with ME/CFS according to the Canadian Consensus Criteria, and have been sick for four and a half years. It is generally acknowledged that there are different types of ME, so that what works for one person may not make any difference to another. On the other hand, it would make sense for anyone with symptoms similar to those of ME to get tested for celiac disease, fructose and lactose malabsorption, and IgG food antibodies. In most places your GP (primary care physician) should be able to order these tests.

 Had lunch out with family members today - first time to enjoy eating in a restaurant for several years. 

Vic Market

I'm off to the Queen Victoria Market tomorrow morning. A trip to the market used to be a priority on any Melbourne visit. When I arrived back early last November I couldn't imagine ever having the strength to get to the market again. It involves a short walk (10 - 15 minutes) to the local train station, a shorter walk (5 mins) from Flinders Street station to the tram, and then a quick hop from the tram into the market - and then the hubub and size of the market itself. I used to wander around for hours, the Sunday morning extended version with entertainment being a special treat. But tomorrow will be a well-planned affair. Arrive at 10:30 am, a brief visit to the food hall (a mecca for foodies!) and then out to the 'shed' to look for a pair of sheepskin boots to keep my tootsies warm over winter. Leave by noon. Back home by 1 pm, lunch (cooked in advance), and ready to lie down before I turn into a pumpkin at 2 pm. No plans whatsoever for Friday - recovery time.

My disgust at how people with M.E. continue to be treated by those in authority in the U.K. is so deep that I am left without words. Fortunately others are not so bereft. One of my favourite bloggers is Nasim Marie Jaffry and you can read what she has to say about the editor of The Lancet here.

And for those of you who have a few pennies to spare (even one pound or one dollar a month will be put to good use) I urge you to join the Count Me in Campaign to raise funds for research into neuro-immune disease at the Whittemore Peterson Institute. Thank you.

XMRV and me

I have not yet had the opportunity to get tested for the XMRV virus – the third human retrovirus discovered following HIV (AIDS) and HTLV (leukemia/lymphoma). There are no labs here in Australia capable of testing for this virus, and – so I’ve been told – no plans to set one up. So anyone here who would like to be tested has to figure out how to get their blood samples sent off to a lab in the USA or Belgium. I will eventually get tested – one of the leading world specialists, Dr Kenny de Meirleir, comes to Melbourne regularly to see patients and arrange for tests. The advantage of getting tested is to enable a decision about taking anti-retrovirals. These are the drugs currently accepted for treating people with HIV/AIDS. In the USA some people with ME (“CFS”) are already taking anti-retrovirals, even though no large-scale drug trials have been carried out (see, for example, this blog written by a medical doctor who tested positive for XMRV: http://treatingxmrv.blogspot.com/).

On the political side of things, the battle rages on – especially in the UK. Studies carried out in the US by government agencies as well as the leading private research institution for research into neuroimmune diseases, the Whittemore Peterson Institute (WPI), have shown undeniable links between people sick with ME (“CFS”) and the XMRV retrovirus. However the WPI is still not winning the government research grants that ought to be coming its way given its excellent record in this area. In the UK both the media (including, disappointingly, The Guardian) and government health authorities are in complete denial (to be kind – the truth is more likely “steeped in corruption or willful ignorance”) over the importance of recognizing and dealing with this health catastrophe that affects around 250,000 people in the UK and is estimated to cost the government billions of pounds annually in lost tax revenues, disability payments, and health care. Estimated ME sufferers worldwide are around 17 million.

If you would like to help make a difference in my life, and the lives of millions around the world suffering from devastating neuroimmune diseases, please consider donating to the WPI on a regular basis (I do!): http://www.wpinstitute.org/help/help_donation.html

For anyone interested in the research and the key documents related to XMRV, please follow these links:

http://www.wpinstitute.org/xmrv/docs/wpi_pressrel_100809.pdf

http://www.sciencemag.org/content/326/5952/585.abstract?keytype=ref&siteid=sci&ijkey=m3wzKT4yJqEyk

http://www.cfscentral.com/2010/08/fdanihharvard-xmrv-study-same-thing.html

http://www.pnas.org/content/early/2010/08/16/1006901107.full.pdf+html

http://www.pnas.org/content/early/2010/08/16/1007944107.full.pdf+html


The New York Times has been especially good about covering the issues. Here are some of their articles:

A Big Splash From an Upstart Medical Center New York Times http://www.nytimes.com/2009/11/12/giving/12SICK.html

New Hope in Fatigue Fight Wall Street Journal http://online.wsj.com/article_email/SB10001424052748703846604575447744076968322-lMyQjAxMTAwMDIwMzEyNDMyWj.html

The Lingering Mystery of Chronic Fatigue Syndrome http://well.blogs.nytimes.com/2011/01/03/the-lingering-mystery-of-chronic-fatigue-syndrome/?ref=health

Exhausted by Illness, and Doubts http://www.nytimes.com/2011/01/04/health/04fatigue.html

Gearing Up for the Big Search for XMRV http://blogs.wsj.com/health/2010/11/17/gearing-up-for-the-big-search-for-xmrv/

Happy New Year Everyone!

Huge changes in my life – I am now living in Melbourne, Australia. Last year I applied for, and after many months was granted, residence in Australia. I arrived here on the 6^th November. I came on an immigrant visa category known as “last remaining relative”. At the time of application I was the only member of my immediate family who did not live in Australia. My parents, brothers and sister, and a growing collection of in-laws are all either Australian residents or citizens. I had held out for as long as I could.

Lemon Tree and Bottle Brush

Melbourne is a city of close to 4 million inhabitants. Aside from an academic year in London a long time ago, I’ve never lived in a big city. I’m a small-town gal at heart, and feel lost in the sprawling, anonymous suburbs of this place. Only the unusual warbling calls of the indigenous birds and the occasional scent of eucalyptus on a warm day hint that this is a very different continent. The suburbs of Melbourne feel just as far from the more evocative Alice or Darwin, Kakadu or the Great Barrier Reef as a suburb of London or L.A.

White picket fence in the suburbs

Next on the agenda: doing the rounds of doctors in the hope of finding answers. At least here there are a few doctors who are willing and interested in treating ME – even if they do not yet appear to distinguish between those with neurological ME, and others with a variety of illnesses that are mistakenly diagnosed as “CFS”.

I have not made any New Year’s resolution to keep the blog going. Either I will or I won’t. To find out, keep checking back!  

The very best site right now for information regarding the failure of the CDC to act is this one:

http://www.cfscentral.com/

The older posts are all well worth reading. The writer is an excellent science journalist. We are indebted to her for the research she has done and the contacts she has made in order to bring us accurate and up to date information.

Why is it important to raise awareness about Myalgic Encephalomyelitis (ME)?

Why am I making such a fuss about this disease and why should you listen to me? The first reason is that this is an illness, most likely caused by either by an enterovirus (like polio) or possibly by a retrovirus (like HIV), which anybody can get – you, your child, your partner, your friend, your lover. From research and experience we know that exercise of any kind makes the illness worse. Your doctor doesn’t know this. Doctors around the world are trained neither to recognize the symptoms of ME, nor how to treat it. There is no cure. Your government is spending no money on bio-medical research into prevention or treatment of this devastating neurological illness that affects more people than MS. The suicide rate for people with ME is unacceptably high; people have died of ME in epidemics, but most deaths from ME go unrecorded as they are (like deaths from AIDS) due to related conditions such as cancer and heart disease.

The second reason to listen is to protect children and young people with ME from dangerous treatment, from an unnecessary worsening of their condition, and from possible forced removal from their families (yes, it happens). Children are particularly vulnerable with this illness, and children as young as five have been known to get it. Because there are as yet no easy tools for diagnosis, such as a simple blood test, children are frequently not believed when they complain of feeling unwell. In both the UK and the USA there are cases of social services forcibly removing children from their families and placing them in psychiatric units, as if they were mentally ill. Having just given away kittens I am living with an upset and bereaved mother cat – I cannot begin to imagine the anguish of caring parents whose sick child has been forcibly removed from their care; yet this is happening in our societies, to children sick with Myalgic Encephalomyelitis. ME is (like MS) a neurological illness, identified and classified as such by the World Health Organization (WHO ICD- 10 G93.3), yet misinformation and obstruction by psychiatrists and insurance companies has blocked bio-medical research into the condition, and has ensured that medical doctors remain in ignorance, or are unable to treat ME patients appropriately. If you are in any doubt about these statements I encourage you to read the Professor Malcolm Hooper report (http://www.meactionuk.org.uk/magical-medicine.pdf) or the book Osler’s Web by Hillary Johnson (available from Amazon). Look up the names of Sophie Mirza and Lynn Gilderdale, young women both dead from ME, both mistreated by the health authorities in the UK. Read about Alison Hunter who died of ME aged 19 in Australia, or read about teenager Ryan Baldwin, forcibly removed from his family by social services in North Carolina on 1/23/2009 (now back home and doing well).

ME may not kill you straight away; it is not as scary as ebola or malaria or dengue fever; but it will take away your life as you know it. Although some people only suffer from mild symptoms and are able to continue working and enjoy some kind of (usually restricted) social life, approximately 25% of people with ME are completely bedridden, living in darkened rooms, unable to feed or clean themselves, totally dependent on family members. These are the people with ME whom you don’t see. Others, like myself, are visible in the street once in a while (I have the energy, on average, to leave my flat twice a week), but we have no social life – we can no longer visit cafés or restaurants, we cannot enjoy a walk on the beach or a day out shopping or a family meal. These simple activities are too painful. 

What can you do?

Learn to recognize the symptoms of ME – early diagnosis may prevent the illness from becoming severe. Understand that exercise makes the illness significantly worse. If you suspect that you, or someone you know, might have ME, stop all exercise and do whatever it takes to get a correct diagnosis. Symptoms of ME include (but are not limited to): dizziness, brain fog (a fuzzy feeling in your head to varying degrees), orthostatic intolerance (you find it uncomfortable to remain standing for more than a few minutes), difficulties with concentration and memory, lack of energy, a heavy feeling or pain in muscles, post-exertional malaise (i.e. exercise makes you feel worse, not better), a general feeling of being unwell (similar to flu or a bad hangover), headaches, extreme fatigue that is not relieved by sleep, difficulties sleeping, digestive problems, extreme sensitivity to light and noise.

Push for government funding into bio-medical causes of, and treatment for, ME. Contact your MP, your senator, your congressman or woman and ask them to ensure that government funds go into the right kind of research. In the UK vast sums of money have been wasted on research into trials of counseling and exercise for people with ME. Would you expect counseling and exercise to help people with MS, lupus or AIDS? No! Nor will they make any difference to people with Myalgic Encephalomyelitis. Government funds should be spent on research into ME in the same proportion as they are spent on MS, lupus, AIDS, or similar diseases. All we ask for is equal treatment – in provision of research funds, medical care, and social services.

One last word – what on earth is “chronic fatigue syndrome”? “CFS” is an idea constructed by psychiatrists and insurance companies to belittle the serious illness Myalgic Encephalomyelitis in order to avoid expensive insurance payments or disability support payments. The correct name for the disease, as listed by the WHO, is Myalgic Encephalomyelitis. Fatigue is a common symptom of many illnesses – cancer, MS, AIDS, lupus, flu, and so on. It is no more a defining feature of ME than it is of MS. Unfortunately many people have been misdiagnosed with “CFS” by badly informed doctors when in reality they have other illnesses that are difficult to diagnose, such as cancer, lupus, MS, etc. For this reason it is urgent that doctors learn how to correctly diagnose ME. For more information the work by Dr Byron Hyde is particularly useful (see: http://www.nightingale.ca/documents/ComplexitiesofDiagnosis.pdf)

ME is not limited to Europe, Australasia and North America. I became ill while working in East Africa; cases have been reported in India, and there are support groups for people with ME (PWME) on Chinese social networking sites.

If you would like to learn more, I recommend these websites:

Nightingale Research Foundation (Dr Byron Hyde) http://www.nightingale.ca/index.php?target=home

The Hummingbirds’ Foundation for M.E.

http://www.hfme.org/

ME Action UK

http://www.meactionuk.org.uk/

Invest in ME

http://www.investinme.org/index.htm

Whittemore Peterson Institute for Neuro-Immune Disease

http://www.wpinstitute.org/

National Alliance for Myalgic Encephalomyelitis

http://www.name-us.org/

The Young ME Sufferers Trust

http://www.tymestrust.org/

The Grace Charity for M.E.

http://www.thegracecharityforme.org/index.asp

Please repost freely (without changes) and pass this message on to friends and family!

Sabra Zoo

With thanks to Nasim I've just read a review of Sabra Zoo which looks like a really good read and will be added to my list of books to get my hands on. Mischa Hiller, the author, also has ME, and towards the end of this interview he discusses its impact on his life. At a time when not so few well-known people with ME are keeping the fact hidden (as if they had AIDS in 1983!), I would like to thank Mischa for being open and honest about the illness.

Buying a copy of Sabra Zoo? Please consider doing so via one of my Amazon links at the bottom of the page - thank you!

I'd like to alert you to something serious:

The Diagnostic and Statistical Manual for Mental Disorders (DSM) is being revised by the American Psychiatric Association (APA) and is known as DSM-5. The creation of a new category called “Complex Somatic Symptom Disorder” could impact ME/CFS/FM significantly. Here's link to Mary Schweitzer's response (reposted on ME agenda). The APA will accept public comments until 20 April 2010.

http://dsm5watch.wordpress.com/dsm-5-proposals/dsm-5-proposals-sub-page-3/

Here's the main page to register with DSM-5.

http://www.dsm5.org/Pages/Default.aspx

And here's the page specifically for CSSM. There's a 'Register Now' link (for comments, etc.) at the bottom.

http://www.dsm5.org/ProposedRevisions/Pages/proposedrevision.aspx?rid=368

The majority of people diagnosed with ME/CFS are women. Children are also frequently diagnosed. Mary Schweitzer's response (see above) explains it all. This will severely impact women in many different ways - women with other serious illnesses (i.e. cancer, MS, lupus, etc) are often mistakenly diagnosed with ME/CFS, and if they are then diagnosed with "CSSD" then they will never receive the medical treatment they need. This is one more way in which women are denied rights to health care and social security. It will impact women and men in many different countries, not only in the US.

People with ME/CFS are frequently too unwell to fight their case - many have already given up, many are simply too unwell to use a computer. We need help from those who are well to join the fight to get this illness fully recognized - this is an infectious, communicable disease: never assume that you won't get it! (I was a fit, active, healthy professional in my early 50's when I suddenly became ill).

Thank you!

Would you accept a blood donation from someone with ME?

Letter to UK Secretary of State for Health

Recently Mrs Ann Keen, Under-Secretary of State for Health, commented that people with Myalgic Encephalomyelitis were not able to donate blood. Invest in ME have written the following letter to the Secretary of State for Health, Mr Andy Burnham.    Myalgic Encephalomyelitis and Blood Donations Rt Hon Andy Burnham MP Secretary of State for Health Department of Health Richmond House 79 Whitehall London SW1A 2NS cc: Mrs Ann Keen MP 14th May 2010 Dear Mr. Burnham, Recently Mrs Ann Keen (in her capacity as Under-Secretary of State for Health) made the following comments in relation to Myalgic Encephalomyelitis and blood donations - "People with myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), are not able to donate blood until they have fully recovered. The reasons for this are: first, blood donors need to be in good health, and people with ME/CFS often experience a range of symptoms which could be made worse by donating blood; and second, as the causes of ME/CFS are not currently fully understood, people with the condition are deferred from donating blood as a precautionary measure to protect the safety of the blood supply for patients." Mrs Keen's comments are, we assume, representative of the government and your department. Firstly it is good that your government recognises that people with ME are in poor health. This implies that all people with ME are therefore in need of proper healthcare provision which treats the disease properly. Secondly it is good that you and your government recognise, by the implication from your statement, that blood supplies may be compromised by accepting people with ME as donors due to the organic nature of this disease. Thirdly it follows that an embargo on people with ME donating blood would mean that there is an infectious agent at work which could be passed on via blood. There follows several questions which lead on from this. It seems to be crucial to use the most stringent diagnostic criteria available for diagnosing ME (which even NICE acknowledge as being the Canadian Consensus Criteria). Yet your department, NICE and the MRC do not standardise on this internationally accepted standard for diagnosis of ME. When you state that people with ME are not able to donate blood are you employing the NICE guidelines for defining patients as having ME? If so then why does NICE proscribe serological testing unless there is an indicative history of infection?  If no initial indication of infection is present then no further blood tests are performed and a patient may receive a diagnosis of ME based on ongoing fatigue and one other symptom such as sleep disturbance. Why then would those patients be excluded from donating blood? As your government officially accepts ME as a neurological illness, as described by the World Health Organisation ICD-10 G93.3 code, and as the issue of blood contamination from an infectious agent demands the utmost care and attention, is it not of absolute necessity for your government to demand that a consistent set of up-to-date diagnostic criteria are used as standard by all organisations? Your department often states that the Medical Research Council is an independent body. Yet as it is apparent that the MRC only funds psychiatric studies which presume that ME is a behavioural illness why does your department refuse to comment on the MRC's usage of the Oxford criteria for research into ME which expressly excludes people with a neurological illness? Why does your department not criticise the MRC for funding purely psychiatric research into ME if you fully recognise that ME is a disease of organic and infectious nature? Since when did a psychiatric illness prevent blood donations? Does this not clearly show the MRC policy of research into ME for the last generation to be completely flawed and a waste of precious funding and patients' lives? When you state that people with ME are not able to donate until fully recovered please can you define what "fully recovered" means?   Could you also provide a description of how a person with ME is defined as no longer having ME? What biomedical tests are available to determine that a person with ME is "fully recovered"? Could you inform of how and when clinicians perform such tests in order to ensure that a person is "fully recovered" from ME? Bearing in mind the seriousness of a possible contamination of blood supplies from people with ME please could you indicate what measures are in place to ensure that doctors do enforce testing to ensure that people with ME are "fully recovered" and will not therefore donate blood? If such a test exists then presumably people with ME who are not recovered are entitled to appropriate benefits due to incapacity and/or disability? As relapses are common with people with ME please could you explain if there is any minimum period which a person with ME needs to be "recovered" to be able to donate blood? Could you also provide information which your government has on the number of people with ME in this country, the proportion of patients who have had ME for longer than five years and how many people with ME have fully recovered? With regard to your statement that the causes of ME/CFS are not currently fully understood is it not inherent on the Chief Medical officer of the UK to attend the 5th Invest in ME International ME/CFS Conference 2010 on 24th May in Westminster, as guest of Invest in ME? As the foremost experts on ME in the world are presenting at the conference, along with the Whittemore-Peterson Institute who have recently been involved in the discovery of the XMRV retro-virus which has possibly huge considerations for the blood supply of this country would it not be sensible for anyone who is involved in healthcare and particularly in the treatment of people with ME to attend this event? Should not the government of this country also be sending a representative to the conference given that contamination of the blood supply by people with ME may be occurring and that education about the disease needs to be a pre-requisite for anyone involved in healthcare provision for people with ME? We would request that you provide a full and complete answer to every single one of the questions which we have asked in this letter and we look forward to your reply, Yours Sincerely, The Chairman and Trustees of Invest in ME Invest in ME Registered UK Charity Nr. 1114035 PO BOX 561, Eastleigh SO50 0GQ http://www.investinme.org/Article-700%20SSfH%20March%202010.htm

Professor Malcolm Hooper takes on the Establishment!

Professor Malcolm Hooper is one of a very small number of the fully-abled willing to take on the establishment in the UK with regards to ME.

Here's the letter he wrote to Sir Michael Rawlins: http://www.meactionuk.org.uk/Hooper-signed-letter-to-Rawlins.htm  (Rawlins is chairman of the National Institute of Health & Clinical Excellence NICE in the UK)

Here's the formal complaint he sent to Lord Drayson, minister of state with responsibility for the Medical Research Council: http://www.meactionuk.org.uk/magical-medicine.htm

Here's his report on ME: http://www.meactionuk.org.uk/magical-medicine.pdf  Read this if you would like to understand what all the fuss is about!

This report will serve as a reference tool for doctors and people with ME for years to come. Thank you, Professor Hooper, for all you've done.

Side-stepping the issue

Some journalists have taken advantage of the recent Kay Gilderdale trial in the UK to discuss assisted suicide. See, for example, this piece from the Guardian by Madeleine Bunting: http://www.guardian.co.uk/commentisfree/2010/feb/08/assisted-dying-danger-vulnerable

I don't read the Guardian, but I do read the Guardian Weekly, where the same article was published under the heading "It's hard to fathom the reality of death". This is my letter to the editor in response:

Dear Editor:

Madeleine Bunting neatly side-steps the real issues emanating from the Kay Gilderdale trial (It's hard to fathom the reality of death, 12 February). This trial may have shown "the English legal system working at its best", however Lynn Gilderdale's many years of suffering with myalgic encephalomyelitis (classified by the WHO - ICD-10 G93.3 - as a neurological illness) have patently shown the British health service (NHS), the medical research council (MRC), and British investigative journalists working at their worst. Ms. Bunting may have difficulty fathoming the reality of death. I have difficulty fathoming the reality of life with a disease that many doctors, researchers, and members of government deem unworthy of their full attention. Why is no one questioning how the British medical system let down this young woman and continues to let down people with ME? No one with ME should feel so abandoned and without hope that they would want to take their own life - this is the real failure at issue here. 

Corruption


I'm posting a comment written by someone else today because I couldn't find a way to say it any better myself - and the more I allow the reality of what this means to sink in, the more stunned I am. People with ME in the UK have literally been sacrificed by those who have more power - and they have enough power to ensure that the way in which their decisions have been made are to be kept secret from the public. OK, here's the post by Andrea Pring; more from me below. 


"M.E. is all over the news today. So glad to see that the subject matter is being given the serious reporting it deserves. However, instead of discussing the niceties and legalities of assisted suicide, what they should be asking is why a young woman was allowed to lie and rot in that bed for17 years with no proper medical care. Perhaps now the country will see how medically neglected sufferers of M.E. are. The psychiatric element has claimed this illness for their own vested interests and as such those who are suspected of having the illness in the UK are DELIBERATELY given inappropriate testing and treatment. Doctors are advised NOT to test for the very things that will show the biological damage that exists. Damage to the heart, brain, spine and nervous system. A simple tilt table test would show how our heart and circulation is impaired but this is one of the very tests doctors are advised NOT to administer.

The corruption goes very deep so deep that in fact there are secret MRC files on M.E. held at the UK Government National Archives at Kew. These files contain records and correspondence dating back to at least 1988 (which is the period when M.E was given psychiatric status in the UK, despite the fact that it was and is classified by the WORLD HEALTH ORGANISATION (WHO) as a NEUROLOGICAL disesase and has been seen as a distinct illness since the 1930's). Initally closed until 2023, this period has now been extended to 2071. The normal closure period is 30 years. Curious?"


You can find the original post here:
http://dancingwiththesandman.blogspot.com/2010/01/corruption.html




The records that have been closed to public view can be found here:
http://www.nationalarchives.gov.uk/catalogue/displaycataloguedetails.asp?CATID=-5475665&CATLN=7&Highlight=&FullDetails=True&j=1


The file is: 

FD 23/4553   Myalgic encephalomyelitis (ME)/postviral fatigue syndrome (PFS) : papers and journal articles; correspondence and enquiries with MRC replies .... and these files have been closed until 2071. Why? Who are they trying to protect? What is going on here? Why is it in the public interest to close these files? I would like to encourage anyone reading this who lives in the UK to contact their MP and the national press about this.

Selection Criteria

For anyone wondering why the recent study carried out in the UK failed to find the XMRV virus, the following piece may shed some light on the matter. I don't know who Peter Kemp is, but I'd like to thank him for writing this!

I wanted to study the nature of penguins.
by Peter Kemp

The 'Canadian' definition of penguins is that they are:

Flightless
They can swim
Largest species up to 1.2 metres tall
They eat mostly fish
They lay 1 or 2 eggs
They generally live in colonies

The 'CDC' definition of these birds is that they are:

Flightless
They sometimes eat fish
They lay eggs
They can swim

The 'Oxford' definition is that these birds are:
Flightless
They lay eggs

The 'Oxford' criteria was chosen for the research as the others were
too difficult to apply. 100 subjects who met the research criteria were studied in
Sub-Saharan Africa.

The research found that penguins:

Live in deserts
Cannot swim
Are up to 2.4 metres tall
Weigh 200 pounds
Capable of speeds up to 40 mph on land
Are mostly vegetarian.

Conclusion:
The research has discovered the truth about penguins. Those funny black and white
birds waddling on the ice and swimming in the sea are making fools of everyone.
They are not real penguins and should be excluded from all further research into
penguins.

Here I am with a couple of Couch Surfers, Jane from Queensland, Australia, and Jenna from St John's, Canada, who stayed with me for a few days shortly before Christmas. They were followed by a couple of young men, Josh from the States and now resident in Germany, and Malik from Pakistan, now resident in Sweden.
I'm a big Couch Surfing fan. Like many others, when I first heard of it I thought "great - a free place to stay!" I quickly discovered that the 'free' side of it was the least important. The best aspect is making new friends and getting to know a place from the point of view of a local person, especially when your host has some free time to show you around.
Now that I'm largely housebound, hosting Couch Surfers has become a significant element of my social life - this is how I travel and meet new and interesting people. I pay a price. One of the worst ME symptoms I have at present is 'brain fog'. This is a kind of fuzziness - like a combination of a really bad head cold with your worst-ever hangover - that invades my head. The more I talk, and the more noise there is around me, the worse it gets. One moment I'm enjoying an animated conversation about the horrors of loud snorers in youth hostels, the next moment the snoring is reverberating inside my head and I'm forced to retreat like someone with migraine. But it doesn't go away. And even though I only enjoyed having guests for five days my poor old head is still buzzing and fizzing and pining me in place, glued to the couch all on my own, wondering when the fog will clear.

A terrific internet-savvy friend has found my links and I'll get them up again soon. I've been busy with visiting Couch Surfers and I'll write about that just as soon as I get a photo from them! In the meantime, I thought I'd post this quote from Dr Nancy Klimas, in the US, just for those who may still think ME isn't a big deal (though I'm sure all my friends are convinced by now!):

“My HIV patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my CFS patients, on the other hand, are terribly ill and unable to work or participate in the care of their families.

I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have HIV. But CFS, which impacts a million people in the United States alone, has had a small fraction of the research dollars directed towards it.”

Click here for the link to the entire article in the NY Times.

ME Blogs

Blogging is a great outlet for people with ME, giving those with a gift for writing the chance to express their feelings and explain the illness to friends. Younger people make up most of the bloggers and there are a small number that I follow regularly. Whenever I'm feeling low, frustrated and resentful about having this illness I do my best to feel grateful that I have it now, at over 50, and am much better situated to cope with it. I feel tremendous sympathy for young people with ME. This is a particularly devastating illness for the young - and children as young as 3 have been known to get it.

One of the blogs I follow is called "Dashed Hopes and Measured Steps" written by a young man living in California. I'm quoting from him now, because I found a recent post of his particularly moving and also informative. His blog address is here:
http://pathogensoup.blogspot.com/

This is what he writes:

Every lesson I've ever learned from this illness has boiled down to what it means to be human, but I've always looked at this illness as part of the journey to who I want to be. I want to be successful and I'm starting to realize I may never be able to accept my place in society as it stands now. In fact, every year gets harder to accept, because I lack the ability to be fully in the present. I need to tell myself several times an hour to stop juxtaposing the past with present because they become more heartbreakingly unfamiliar with each other every year.
...........

Our illness is so debilitating yet there's no single way of describing it to entrench the severity within anyone's mind. My own mother had no idea how debilitating this was until last year, when she traveled with me to Germany and saw how I limited my walking to 20 minutes a day. If I don't sleep 9 hours, I feel like death tomorrow. If the room I sleep in isn't virtually mold and chemical free, I can't sleep. If I feel abnormally great today, I guarantee I will feel equally sick tomorrow--in math, we called this "inversely proportionate." If you Rufie me and stuff a pastry down my throat, I feel like death. If you don't let me sit down after 10 minutes, my heart feels like it's trying to stab itself. Any stressful situation send my sympathetic nervous system into overdrive and takes hours to calm back down. Are these actual symptoms of this disease not bad enough on their own? Why the duplicitous outward appearance of health to cause suspicion and misunderstanding from others that care about us?

Hey Big Guy, what were you smoking when you drew up our illness? "Say Angels, wouldn't it be a great social experiment to compare the psychological damage from, say, HIV and cancer to that of feeling just as ill but having no one understand WTF they're talking about?" "By Jeezes, yes it would!!"

Going Commercial

Today, 3 December, is the International Day of Persons with Disabilities (designated by the UN). In the past, on rare occasions when I tried to imagine what it would be like to be disabled, I would imagine myself in a wheelchair or maybe blind, and wondering how I would cope. I wondered if I would be brave and work hard to overcome all obstacles like some amazing disabled athletes or scholars manage to do. What I never - ever - imagined was invisible disability; the type of disability that others cannot see and thus leads them to think that maybe you're 'putting it on' without stopping to consider what you might lose - rather than gain - by such an action. I have lost my job, my income, my social life, my freedom of movement, the ability to enjoy a long walk, and even the ability to enjoy a chat with friends. I have been refused insurance payments that were rightfully mine; where I live now I am not eligible for welfare payments of any kind, and the cost of living is so high where I might be given welfare that moving would be pointless. I am struggling to find a way to make a living with the one or two hours a day when my brain might be said to function. Hence my decision to give in and have advertising on my blog. I don't expect more than a few pennies a week - but it's a start. I don't like some of the advertising, but I'm not sure how much choice I have over that. I apologize in advance to anyone who is offended by any of the adverts.