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.

Haiti

The situation in Haiti is beyond desperate, beyond description. Hundreds of thousands killed. Please give generously, give today. Links to both Doctors Without Borders (Medecins Sans Frontiers) and Partners in Health on this page.

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.

People with ME tend to avoid parties, so I stayed in as usual last night and indulged by watching “Love Actually” for the zillionth time. In the early hours my cat Fynn held his own private football match with a ping-pong ball that ricocheted noisily across the tiled floors and limestone walls. I had decided against the earplugs, which help me sleep but also sometimes make me worry about what necessary noises I might be missing. I’ll be in good company around the world with my fuzzy achy head this morning. If you over indulged last night and are feeling the worse for wear today, keep in mind that for most people with ME this is how we wake up feeling every single day of the year.

"Once in a blue moon" - a full blue moon over St Paul's Island, early morning, 1st January 2010.