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. 

Chase Community Giving


Chase (the bank people) have set up an interesting system for deciding who gets some of their money. Instead of figuring out for themselves who is most deserving, they leave it up to the public to vote. So an institution doing serious research that could, in the end, save hundreds of thousands of lives (not to mention saving the US national economy billions of dollars on medical bills and disability payments) is left using up precious time to scramble for votes among patients, many of whom are bed-bound without the energy to use a computer. I guess I'll pass on social commentary and the questions surrounding corporate social responsibility and how it is managed. Let me just say, if you're reading this, please join Facebook and then 'like' Chase Community Giving, and then vote for the Whittemore Peterson Institute - they are working hard to find a cause and a cure for myalgic encephalomyelitis (aka "CFS") and I am enormously grateful to them. And I've copied the next bit from someone who writes far better than I do, Laurel, who writes the Dreams at Stake blog:


"In my opinion, the WPI has done more for ME/CFS research and awareness in the last few years than any other organization or government institute has done in 25 years. I am hopeful that, with enough funds, they will someday soon be able to find definitive biophysical markers, viable treatments (currently none exist) and possibly even a cure in my lifetime.

It is important to note that the WPI is also seeking answers for autism, Lyme disease, atypical MS and other neuro-immune diseases.

To vote for them, all you need to do is the following:
(Note: Facebook account required)

1. Go to: http://www.facebook.com/ChaseCommunityGiving?ref=ts
2. Click "like" on top of the page
3. Go to: http://apps.facebook.com/chasecommunitygiving/
4. Type "Whittemore Peterson Institute" in the search box
5. Click on the WPI and then click VOTE!

And you are done! It takes less than one minute, and could make a huge difference for all those suffering from this disease."

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.

Random Thoughts on Healing

"Nothing herein should be construed as medical advice"

There is almost nothing more certain of bringing about a relapse than writing about feeling better. Four weeks of eating foods I normally avoid, in order to get tested for various food intolerances, left me with a noticeable worsening of symptoms: fuzzy brain, lethargy, stiff and achy limbs, and stomach problems. Now that the tests are over and I'm reverting to a wheat-free, dairy-free diet I'm picking up speed again. And I'm now more convinced than ever of the role of diet in treating this disease in some patients.

I'll admit I'm a little slow to catch on. Partly that's because I've tried avoiding different foods in the past with limited effectiveness; partly because there's so much information out there on the internet that I find it overwhelming, confusing, and frequently contradictory. Aside from the merest handful of doctors taking an interest in this disease, patients are left to scrabble around on their own in search of answers. This makes for a very large group of vulnerable people (estimated 17 million worldwide). Many are simply far too sick to use the internet or libraries; many are too sick to make it out of bed and into a clinic; many are just clinging on, burdened with other responsibilities such as taking care of equally sick children; most don't have the scientific background that would enable them to understand the published research papers that shed light on the illness.

A couple of recent readings are driving me forward at present. One is a recent blog entry written by a doctor who has ME, as do her daughter and husband. Dr Jamie Deckoff-Jones is read and appreciated by thousands of patients for her openness and willingness to discuss the disease and treatment that she is trying out on herself. It is worth reading as much of her blog as you are able:

http://treatingxmrv.blogspot.com/2011/03/treatment.html

I look in on the patient forum "Phoenix Rising" from time to time (with thanks to a good friend who encourages my participation). I avoid most of the patient forums, but this thread was brought to my attention and I found it interesting enough to copy and re-read:

http://phoenixrising.me/forums/showthread.php?1346-what-you-need-to-do-and-why

The tests that I've had to date show that I have a "leaky gut" problem (aka "gut mucosal barrier dysfunction") and a problem with fructose malabsorption. Unfortunately I have another 3 months to wait for further test results and my next appointment with the doctor. In the meantime I am adjusting my diet in line with the test results. The more I read the more convinced I am that diet underlies many health concerns. I would encourage everyone with any health problems at all (including mental health) to get tested for food intolerances and allergies, lactose and fructose malabsorption using the hydrogen breath test, to try and figure out if you have a sensitivity to salicylates, and to test for coeliac (celiac) disease – one of the most commonly undiagnosed health problems (it can be asymptomatic but still cause internal damage). Work with a recognized, qualified medical practitioner whenever possible. And read widely!

Feeling Better?

At one time I thought: “if it doesn’t get me back to work then I don’t want to know” when considering a “cure” or treatment for M.E. But in the past two months I’ve picked up around 10% in my overall health – and that 10% makes a big difference.

I can now drive short distances. This means I can go to the library, do some grocery shopping, get a hair cut, and go for some medical appointments without needing to ask for help. The sense of independence this provides is liberating – I am so dependent on others for many crucial aspects of life – and lifts my mood on days I go out.

The question I’m asking myself now – and if you have M.E. you may be thinking it too – is what have I done to feel better? Following are the main variables that have changed in my life in the past four months since moving to Melbourne from Malta:

Less exercise: I no longer need to carry my groceries – either someone else is doing the shopping, or I go by car; I no longer need to do all the cleaning myself; I no longer use stairs on a daily basis; I no longer have cats to clean up after and entertain (I miss them, but that’s a different matter).

Diet: I have been careful about diet for a long time, but have recently made further changes: cutting out sugar and sweet things entirely; cutting out wheat and gluten almost entirely; greatly reducing the amount of carbohydrates (rice, oats, bread, pasta, etc) eaten; reducing the amount of food I eat and eating smaller portions for all meals; limiting fruit to 1 piece a day (or less). I am in the process of getting tested for a wide range of food intolerances, including testing for celiac disease, so expect more adjustments to come.

Climate: Melbourne has a significantly drier climate than Malta, where humidity causes a lot of discomfort for people with ME and MS, in both summer and winter.

Noise: I now live in a relatively quiet suburb where I’m exposed to far less noise from neighbours, traffic, and local construction projects. The level of noise pollution in Malta has reached intolerable levels, and caused me a lot of stress.

There are other differences, but I think these are the most significant. Or it is just in the nature of this disease with its fluctuating symptoms that I happen to feel somewhat better at present. I must still be on my guard: a couple of hours away from home, spending time with another person, will still leave me feeling brain-fogged and drained. Ready to return to work I am not.

Visiting my father's photographic exhibit at the Monash Gallery of Art on one of the hottest days of the summer. 

UK PACE Study Highly Misleading

I've sent the message below to some journalists. Please feel free to send this message on to anyone else you know, journalists, doctors, whomever. It is extremely important that we do our best to counteract this highly misleading study that has just been published in the UK. It will have a negative impact on us all.

Dear -------,

Today the Lancet has published a study regarding "Chronic Fatigue Syndrome" which is highly misleading. I would very much appreciate your taking the time to read the following press releases and publishing a piece in ------- that gives accurate information about the problems with the PACE study.

Patient groups all over the world are aghast at this new study - we all know from personal experience (as I assure you I do) that exercise makes the condition far worse. This study will literally endanger the lives of millions - especially vulnerable children who are unable to speak up for themselves if forced to exercise beyond their capacity.

This is the link to the Lancet publication: http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60096-2/abstract

It is crucial to note that the participants in the study were: "patients meeting Oxford criteria for chronic fatigue syndrome".
However the Oxford criteria are so vague as to include almost anyone who feels "tired" and do NOT account for people with the neurological illness M.E. as identified by the WHO and the more commonly accepted Canadian Consensus Criteria (available here: http://sacfs.asn.au/news/2010/08/08_13_canadian_consensus_case_definition_revisited.htm)

Please see the statement from the ME Association in response to the study:
http://www.meassociation.org.uk/?p=4607

And the statement by Professor Malcolm Hooper:
http://www.meactionuk.org.uk/Hooper-response-to-PACE-Trial-Press-Release.htm

This press release from the ME/CFS Worldwide Patient Alliance also came out today:
http://mcwpa.org/wp-content/uploads/2010/12/XMRV-Leads-to-Chronic-Infection.pdf

This is how the NY Times has reported on the study:
http://www.nytimes.com/2011/02/18/health/research/18fatigue.html?_r=3


I also recommend watching this trailer for an upcoming film about M.E.:

http://www.youtube.com/watch?v=JzcjVVQk5UM&feature=youtu.be

Please let me know if you have any questions. Thank you very much indeed.

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.

Addicted to Facebook

I'm embarrassed to admit that FB takes up far too much of my time. Even worse, I've just become one of the moderators of a group: ME Sufferers Malta. I post a lot of ME-related articles and links on the group page. If you know any Maltese with ME, please let them know about our new group. There's also a website: http://www.mesufferersmalta.org/ which is run by Rebecca Sultana, who does an amazing job in spite of the debilitating illness.

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

More on the MRC secret files

Returning to an earlier post (see January 28, this year), I have just found this discussion of the Medical Research Council's secret files: http://www.meactionuk.org.uk/The-MRC-secret-files-on-ME.pdf

I would write a summary, but my brain just isn't up to it any longer. And for those who don't know me, I've completed two Master's degrees each with a research dissertation, from leading universities on each side of the Atlantic, so saying I'm not up to summarizing a short article is an indication of just how badly this illness has affected my brain.

I made a request to view the "secret files" and this is the response I received:

"The Section 40 (2) exemption is therefore seen to be engaged towards the overwhelming majority of this extract contains the personal sensitive data of named individuals who are believed to still be living. Whilst The National Archives is unable to comment on the specific nature of such information, it may confirm that such information includes the medical details of named individuals including how ME affects them and other matters relating to their condition. As such it would be considered unfair to these named parties were this material to be released into the public domain. Consequently it has been determined that the public interest is best served in this instance by ensuring that the personal sensitive information of living individuals is not released into the public domain against their reasonable expectations and that all such material is processed fairly and lawfully."


Of course I don't believe that this is the real reason for one minute! It doesn't seem to have occurred to these gate-keepers that they could easily either a) black out the names of the individuals, or b) ask the individuals if they mind their names being made public (I've yet to hear of anyone with ME keeping their identity secret). Of course, as the article above notes, such care about hiding identities is not taken with other documents, so why with these?

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. 

One of my women friends is heading off at the end of the week for a 3 month stint in Haiti - and I'm jealous! I so hope I’ll get well enough soon enough to go back out and do some interesting work in interesting places. I would just love to go and teach in Jordan or Syria!

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.