An Investigation into the Cognitive Deficits Associated with Chronic Fatigue Syndrome

For anyone interested enough to plough through this research report, it goes some way to explaining why I'm unable to work, even though I look ok:

http://www.pubmedcentral.nih.gov/articlerender.fcgi?tool=pubmed&pubmedid=19452031#top

Just Four Quid!

Once in a while someone asks "when are they going to find a cure for ME?!" - well, the cure won't be found without bio-medical research, and the research won't get done without funding. So there's a big campaign going on in the UK right now to raise funds for research. Details about how to make a donation can be found at: http://justfourquid.com/

The idea is that if each person in the UK estimated to have ME (a quarter of a million people) were to give four pounds towards research, then a million pounds would be raised. If you know someone with a UK bank account, or you have friends in the UK who might consider donating four quid towards research, then please send this message on to them, and ask them to keep sending it on to others! All we need is for 250,000 people to give four quid each!

Swine Flu - the Flu Pandemic

Let's get some numbers into perspective. Number of deaths from swine flu to date: 101 (one hundred and one). Number of deaths from road accidents annually in the USA: 50,000 (fifty thousand). Number of people diagnosed with swine flu in the UK at present: 2 (two). Number of people with MS in the UK: 85,000 (eighty-five thousand). Amount of money spent on biomedical research for MS in the UK: a lot, because they seem to keep coming up with more information and potential treatments quite often. Number of people estimated to suffer from ME in the UK: 250,000 (two hundred and fifty thousand) - conservative estimate, 25% of whom are severely affected, i.e. totally bed-bound. Approximate cost to the UK economy of people ill with ME: £3,500,000,000 (3.5 billion pounds, parliamentary data). Amount spent on biomedical research for ME in the UK: £0 (zero). Number of doctors in the UK who know the difference between ME and CFS: 2 (two) - well, that's the impression I get, but I may be exaggerating!

Would someone please tell me what's wrong with this picture?

May is ME Awareness Month! For more information on issues surrounding funding biomedical research into ME please see the Invest in ME website: http://www.investinme.org/index.html

ME: a full-time job!

A couple of friends have asked how I spend my time. The question comes from the viewpoint of professional women in demanding jobs (like I used to have!) who longingly imagine the delights of a month or even a year off work with nothing much to do. And naturally they also imagine that I’m well enough to enjoy not working, because when you’re well, but maybe just a bit tired, it’s awfully hard to imagine not being well.

On my very worst days I’m not actually well enough to do anything at all. I lie on the sofa and sleep, or just doze and watch the clouds scudding past the window. My head is full of cotton wool, I’m dizzy, and barely have enough energy to get an apple or crackers and cheese from the kitchen when I’m hungry. I may get three or four days a month like that. But I’m grateful; people with more severe ME are in constant pain, are often bed-bound, and generally have a greater variety of unpleasant symptoms involving digestive, muscle, joint, and even heart problems.

On better days I have a goal: to do whatever I can that might help me get well. For the first few hours of the day my brain doesn’t even function well enough to remember my goal, so I just sip my ginger & lemon tea, prepare breakfast, listen to the news, play with the cats, read e-mails and the BBC website, and maybe make one or two phone calls if I’m up for it. Then I’ll take a shower, do a short yoga stretch routine, and my first meditation session of the day. I may wash some laundry and take it up to the roof to dry; or I’ll take a short walk to the local shops for cat-food, eggs, or chocolate. Then it’s time to cook lunch. There’s plenty of advice on what to eat floating around on the internet if you’ve got ME; a healthy diet is important, and that means plenty of fresh, and freshly cooked, vegetables. I’m not known for being a cook, but family members might be surprised at how much cooking I’m doing these days. It’s turned into my new hobby, and I’ve been scouring cookbooks and cookery websites for delicious new healthy recipes, and making up a few of my own along the way.

After lunch is almost always rest time. Rest is extremely important for people with ME – even if one doesn’t feel like resting. It’s far too easy to overdo things and end up suffering a relapse soon after as a result. Many people with ME were busy professionals before they became ill, and resting doesn’t come naturally. There’s always that feeling of “I ought to be doing something”, and that’s how some people remain ill for longer than they might otherwise. The instinct is to “fight” the illness, but ME doesn’t react in the same way as the usual kind of illness and fighting back can make it much worse. So my afternoons are close to sacred rest time; I may sleep, listen to a relaxation tape, or read if I’m feeling well enough.

Late afternoon is when some of my brain fog begins to clear – on a good day! I may go out for a short walk (ten or twenty minutes at most) along the sea front close to my flat. Then I’ll do a longer yoga session and another meditation session, followed by dinner and washing up. Often as not I won’t feel well enough to do the dishes and will leave them for morning. A couple of hours to write some e-mails, check out what my friends are up to on Facebook, look at other blogs, or do yet more research on ME – research that has consumed many, many hours of my life since I was diagnosed last October.

And so to bed – and if I’m really lucky, a full eight hours sleep (actually rare for people with more severe ME). What have I not done? I don’t have a social life. I don’t visit places of interest on this historic island. I don’t sit out in the sun (extremely detrimental to ME). I don’t watch TV and rarely watch a film. I don't clean much. I’ve almost given up listening to the radio (too stressful). I make few phone calls. Sometimes I don’t talk to another person for two or three days in a row. It’s not a holiday – but the goal is to get well.

For anyone who’d like to read a longer version of what life is like with ME, try “The State of Me” by Nasim Marie Jafry, or “Verity Red’s Diary” by Maria Mann. For a journalist’s exposé of the medical research establishment's failure to take the illness seriously, see “Osler’s Web” by Hillary Johnson.

My Brain is Controlled by Aliens

A snippet taken from a report of the IACFS/ME conference in Reno, Day 4, March 15, written by Kim McCleary, President & CEO, The CFIDS Association of America, posted on the Life as we know it blog (http://cfs-facts.blogspot.com/).

"A short but interesting session on the brain and cognitive function followed. A most intriguing study from Harvard showed that rigorously selected CFS patients were clearly distinguishable from depressed and healthy controls using spectral coherence EEG data. Presenter Frank Duffy, MD, concluded, "These data are in accord with much previously reported data indicating that CFS is a condition that causes objective, measurable perturbations in central nervous system function." He suggested that if replicated, these EEG data in combination with other brain imaging techniques might be diagnostic for CFS. A study of adult cognitive performance by Elke Van Hoof of Brussels showed slow processing speed, as has been reported by several other groups, lower performance on tasks which require complex processing, and CFS subjects' need for more time to complete reaction-time related tasks."

This may not mean much to most of you, but for me it is highly meaningful. I know there's something going on with my brain - I am not functioning like I used to, but trying to explain this to others is close to impossible. The nearest I get is to say that my head is full of cotton wool, or I feel like I have a bad hangover - without the benefit of having enjoyed the alcohol - and drinking a good cup of coffee only makes it worse. It would be great to be able to hold up the results of a scan and show that 'here is a normal brain - and here's what's going on in my brain'.

Not so NICE

The message below refers to the recent UK high court judicial review of the National Institute for Clinical Excellence (sic) guidelines on ME. See also: http://www.investinme.org/IIME%20Campaigning-NICE-Whats-Next.htm

Message from Kevin Short

(One of the Claimants who brought the [NICE judicial review] case)

DR RAMSAY WILL HAVE HIS DAY....

From the ashes of a certain legal case I am reminded of the words of the late Dr Melvin Ramsay, that wonderful ME sage and still ever present thorn in the flesh of establishment expediency:

"When, on occasion of a... ITV programme on the subject of Myalgic Encephalomyelitis, an immunologist stated the 'ME and PVFS are regarded as synonymous' I realised my objection to the latter term was fully justified and that it was incumbent on me to show that such a statement is blatantly untrue."[1]

Quite right. ME is NOT a bit of short-term post viral 'fatigue', neither is it a bit of short-term post viral fatigue compounded by depression and misplaced beliefs that one has a multi-system neurological disease - that in turn leads to muscle-deconditioning.

NO; Myalgic Encephalomyelitis IS a multi-system neurological disorder, and rightly recognised as such by the WHO since 1969. It is a serious disease that destroys lives and leads to early death through organ-failure in a significant minority of patients.[2]

All this is NOT mere 'outdated' Ramsay rhetoric, IT IS ESTABLISHED MEDICO SCIENTIFIC FACT.[3]

There are literally thousands of erudite and peer-reviewed biomedical studies which testify to this - and the gathering tide of such evidence swells and grows in number bringing with it the inevitable truth that one day will be undeniable: that ME is NOT the same as 'Chronic Fatigue Syndrome',

ME is NOT the same thing as 'Chronic Fatigue',

ME is NOT the same thing as 'Idiopathic or
Unexplained Fatigue',

NOR is ME the same thing as the latest NICE-sponsored crass abuse of medical taxonomy: "CFS/ME". ME patients should NOT be treated the same as Idiopathic Chronic fatigue patients, and to produce a State Guideline that does so under the misleading label of 'clinical excellence' is a national disgrace. It makes about as much sense as giving the same treatment to dental and brain-tumour patients under the dubious label of 'Chronic Head-Pain Syndrome'.

Like King Canute and his powerful friends in his court, one day the lie of those who seek to neglect, misrepresent and abuse medical taxonomy and science - including those indulging in political skulduggery with the WHO International Classification of Diseases - will be overwhelmed by the tide. The ever rising tide of biomedical scientific FACT.

They will be shown up for what they are.

Forgive me for borrowing a few words from another British sage. This time from one who was partial to a bit of rhetoric: "...we may have had our Dunkirk, but we will go on fighting and we will win the war."[4]

Kevin Short.
contact@angliameact ion.org.uk

[Permission to repost].

NOTES:

[1] The Clinical Identity of the Myalgic Encephalomyelitis Syndrome; By Dr A Melvin Ramsay MA MD; Leaflet published by the ME Association (UK).

[2] http://www.sophiaandme.org.uk/

[3] See, for example, M.E. (Myalgic Encephalomyelitis) BASIC INFORMATION, at: http://angliameaction.org.uk/docs/ME-basic-information.pdf

(this link may take time to open as it's a large PDF file. Remember to use your browser back button to return here)

[4] The words of Sir Winston Leonard Spencer-Churchill; Prime Minister and First Lord of the Admiralty.

Sound Familiar ?
Greg Crowhurst 8 March 2009
Permission to Repost

Its cause remains unknown. There is no known cure. It develops differently in each person and women are more likely to develop the disease than men.
Diagnosis is dependent upon the elimination of other physical causes.

The only way to be sure a person has the disease is to examine their brain after death.

Patients cannot fully recover from the disease. They can be helped, especially if the disease is discovered early enough.

It is a disease that affects millions around the world and there are huge issues with NICE.

Sound familiar ?

No, it is not ME, it is Alzheimers.

------

It is a chronic disease of the central nervous system. It leaves distinct layers of scar tissue in the brain, yet it is a fairly unknown and complex disease.

There is no known direct cause of the disease.

Diagnosis takes months of testing and the ruling out of other physical causes.
There is no single direct test for this disease.

There is no cure either. Treatment plans are highly individualised for each person.

There is no known way to prevent the onset of the disease.

It affects millions around the world.

Sound familiar? No it is not ME, it is Multiple Sclerosis.

------

In its severe state it is particularly frustrating to care for, partly because it is heterogeneous. The genetic and environmental elements that may cause the disease are still poorly understood.

No it is not ME, it is Asthma.

----

For many years doctors thought that Irritable Bowel Syndrome was a psychiatric rather than a physical disorder. Just as they still do in ME.

As Stephen Ralph asks: how many times have we seen a psychiatrist or a psychiatric study describe "CFS/ME" as a "poorly understood illness?" (2008
http://www.meaction uk.org.uk/ Why_the_CISSD_ Project_MUST_ Fail.html)

Yet ME is only one among countless poorly understood illness in the world.
Here's just a few at random (references available upon request):

Breast Cancer is still poorly understood.

The mechanisms behind the "eczema itch" are complex and still poorly understood.

Endometriosis is still poorly understood and its cause is still unknown.

Obesity's connection to Cardiovascular Disease is complex and still remains poorly understood.

Osteoarthritis is still a poorly understood disease, that has little to with wear and tear. There is still no cure.

Airport malaria is still a poorly understood disease.

Neurocysticercosis : cystic lesions on the brain, is a poorly understood disease.

Why women develop heart disease is still poorly understood. It is still a mystery, for example, why younger woman are still more likely to die from a heart attack than older woman.

Chronic Prostatitis Syndrome is a common, but still poorly understood condition.

Pulmonary-renal syndrome is still a poorly understood clinicopathologic condition .

Severe Acute Respiratory Syndrome (SARS), is still a poorly understood disease, despite being classified by the WHO in 2003 as a global threat to health .

Insomnia is still poorly understood by the medical profession.

Crohn's Disease and Ulcerative Colitis: are still poorly understood.

Calciphylaxis, a complication of end-stage renal disease is still a poorly understood clinical syndrome.

Kawasaki disease, which involves the skin, mouth and lymph nodes is a poorly understood disease, despite being studied since World War II.

What is so tragic is that NONE of the poorly understood diseases listed above cite psychiatric rehabilitation techniques as their first-line treatment interventions, as they do in ME.

People above are suffering, often terribly, but at least they taken relatively seriously; what we have to deal with is off the scale, and all because "in the
1970s certain psychiatrists became involved (with ME,) notably McEvedy and Beard, who in a paper with no scientific merit whatever, dismissed ME as mass hysteria (see: BMJ 1970:1:7-11). "Marshall E, Williams M, Vade Mecum http://www.meaction uk.org.uk/ Vade_MEcum. htm

Will we ever know just how many deaths, how many endless hours of ongoing suffering, how many broken hopes and dreams that has led to?

Me, I'm just screaming.

(Greg Crowhurst is the husband and carer of his wife, Linda Crowhurst, who has severe ME. Thanks for writing this, Greg!)