MEAB's Ronde van Vlaanderen - Protest tegen de slechte werking van de 'CVS-referentiecentra'

Op maandag 1 december gingen we samen met een groep geëngageerde ME-patiënten, ex-patiënten en gezonde vrijwilligers, touren langs de Vlaamse CVS-referentiecentra aan de universitaire ziekenhuizen van Gent, Antwerpen, Leuven en Brussel en het kabinet van de federale minister van Volksgezondheid Laurette Onkelinx. Een heel fijne dag met een groep leuke mensen, allen met één doel voor ogen : komaf maken met de foute CGT/GET-behandelingsstrategie voor ME binnen de referentiecentra, en bewustwording creëren rond de juiste biomedische aanpak voor deze ernstige neuro-immuno-endocrienaandoening. En er werd naar ons geluisterd.....

Dit zijn enkele sfeerbeelden :

 
 
 
 

Dit is een link naar meer foto's.

Een bewonderenswaardig initiatief van MEAB. Over de concrete resultaten van deze actie berichten zij nog verder.

ALS (amyotrofe laterale sclerose) – aangrijpend Canadees filmpje

Francis Vansteenwinckel (géén directe familie, al hebben we wellicht gemeenschappelijke voorouders), fotografisch kunstenaar én zelf ALS-patiënt, stuurde mij een aangrijpend filmpje van de ALS Society of Canada. Het filmpje toont heel duidelijk de impact van deze (meestal) agressief verlopende én fatale neurodegeneratieve aandoening op de levenskwaliteit van de getroffenen. Het begeleidende kinderliedje 'Head and Shoulders, Knees and Toes', heel toepasselijk, schept een sfeer die je echt naar de keel grijpt. Een geslaagde promotiestunt van de Canadezen voor meer onderzoek naar de oorzaak en vooral effectieve behandelingsmogelijkheden voor ALS.



Over de werkelijke oorzaken van ALS is men het niet eens. Foute expressie van het gen dat codeert voor Cu/Zn superoxide dismutase, een heel belangrijke antioxidatieve stof die het superoxide-anion wegvangt, werd aangetoond in enkele gevallen. Wellicht speelt een bredere vrije radicalenpathologie t.g.v. chronische toxische belasting (viraal, zware metalen, enz......) een rol. Correctie van het essentiële-vetzurenmetabolisme zou preventief werken.
In ayurvedische middens wordt vata-corrigerende therapie toegepast om de progressieve degeneratie van de motorische zenuwcellen tegen te gaan.

Meer over ALS : in het Nederlands / in het Engels

Bits and pieces on evolution, life and death, personal and universal conscience,... in literature of all ages and places

Just 3 pieces of poetry I've (re)read this afternoon. Enjoy.

"...'Tis all a Chequer-board of Nights and Days
Where Destiny with Men for Pieces plays:
Hither and thither moves, and mates, and slays,
And one by one back in the Closet lays..."

From a poem in the 'Rubaiyat' collection of verses, attributed to Omar Khayyam (Persian mathematician, philosopher, astronomer, ca. 1048-1122) – English translation by Edward Fitzgerald

“...Our revels now are ended. These our actors,
As I foretold you, were all spirits, and
Are melted into air, into thin air:
And, like the baseless fabric of this vision,
The cloud-capp'd towers, the gorgeous palaces,
The solemn temples, the great globe itself,
Yea, all which it inherit, shall dissolve,
And, like this insubstantial pageant faded,
Leave not a rack behind. We are such stuff
As dreams are made on; and our little life
Is rounded with a sleep...”

From 'The Tempest' by William Shakespeare

“Two birds living together, each the friend of the other, perch upon the same tree. Of these two, one eats the sweet fruit of the tree, but the other simply looks on without eating.”

From the 'Mundaka Upanishad', third mundaka, first khanda, mantra n°1

Flavonoids : changing views on nutritional benefits

Flavonoids in fruits and vegetables are phytochemicals that were commonly thought of by most nutritionists as strong antioxidants, hence their beneficial effects on human health, at least, that's what we were led to believe. According to research performed at the Linus Pauling Institute, this could be far beside the truth. Flavonoids certainly are healthy, but probably for other reasons than as 'rust removers'. I've always felt that the whole 'free radical damage/antioxidant therapy' story was, first, a little too simplistic, and second, 'gefundenes Fressen' for eager nutraceuticals marketing machines. What follows makes more sense for me....

As it looks, flavonoids are indeed strong antioxidants in the test tube, but, once ingested as part of the diet, are highly metabolized in humans, and in this process lose most of their antioxidant activity. But they do show a strong influence on cell signalling and gene expression, with relevance to both cancer and heart disease. By following the activity of flavonoids in the human body, scientists discovered that what really happens is that the body wants to get rid of these 'foreign compounds', and this process induces phase II detox enzymes that help in eliminating mutagens and carcinogens. Flavonoids also increase production of nitric oxide synthase, resulting in more 'relaxed' and less inflamed blood vessels, and lower blood pressure. Both these protective mechanisms could explain the results of many studies showing that adequate intake of fruits and vegetables, but also intake of flavonoid-containing coffee, wine, tea, chocolate, etc... does indeed offer protection against cancer, heart disease and other degenerative conditions.

Story of love : "I let my husband die...."

From The Guardian, UK, on August 18th :

After granting her partner Paul's last wish to die in peace, Jill Anderson was shocked to find herself in court being blamed for his death.

On the afternoon that my husband Paul decided to take his life, I was at the supermarket buying his favourite pizza for tea. As soon as I got home, my instinct told me that something was wrong. I dumped my hopping bags in the kitchen and went upstairs to our bedroom. Paul was sitting on the side of the bed with his back to me.

"I'm sorry," he said. "I've taken enough this time." He rolled on to his back and I noticed that there was a piece of paper stuck to his pyjamas. I knew it was a note for me. Paul had written it in case he fell unconscious before I got home. It explained that he couldn't stand the pain any more, and was signed, "Your darling bear, Paul."

In the few seconds it took me to read, Paul had drifted off to sleep. From the corner of my eye, I could see a pile of empty sleeping pill and morphine packets on the bedside cabinet. I could not bring myself to check how many of the tablets Paul had taken. Part of me hoped that he hadn't taken enough, but deep down I knew that he meant it this time.

He had taken two overdoses in the past, but admitted immediately that they had been cries for help. Both times I had called for an ambulance. This time, ringing for help simply wasn't an option. I wanted Paul to live more than anything, but I also knew how desperate he was to escape his suffering. I had to put his wishes before mine.

I had known that Paul was the man for me as soon as we met at a pub in Richmond 10 years earlier. He was intelligent, funny and kind. Two years later, we got married at Chelsea register office. Just days before the wedding, Paul developed flu-like symptoms, which hung around long after the honeymoon had ended.

Paul saw countless doctors and specialists in an attempt to get a diagnosis. He had suffered from arthritis since childhood and wasn't a stranger to poor health. When the doctors failed to explain why he was so exhausted and achy all the time, we scoured the internet and eventually drew our own conclusions. All the symptoms matched those associated with ME, or chronic fatigue syndrome. Paul was obviously suffering from a severe case. We moved to a rented cottage in Yorkshire in the hope that the fresh countryside air might aid his recovery, but over the years his symptoms worsened.

Paul was a gifted linguist and shortly after meeting we set up a translation business together. But as his health deteriorated, so did the business and we went bankrupt. He was in constant excruciating pain, which he described as like having toothache all over his body. I could hear his bones crunching when he moved, yet most of the medical professionals we saw concluded that his illness was all in his mind. They tried to suggest that Paul was suffering from depression, but he was like an active man trapped inside a 95-year-old's body. He felt so frustrated, but he directed his anger at his own weakening body.

His condition had worsened to the point where even washing and shaving were a struggle. He kept his mind active by reading and watching the news and documentaries on TV, but he needed to be out there living life rather than observing it from his bedroom. He was struggling to deal with the burden of his illness and loss of independence. His hope had faded along with his health.

Now, as Paul lay dying in our bed, I kept myself busy downstairs. I felt strangely calm as I put away the food that I had bought for us to eat together and replied to some emails. It was a warm and peaceful July evening.

I went into the garden to pick some flowers for Paul's bedside table. I also checked on him constantly through the night, wiping the sweat from his brow, lying next to him as he slept and telling him how much I loved him.

I didn't think of the past or future. Paul woke up only once that night and asked for his headphones so he could listen to his radio. At 9.30 the next morning, he took his last breath. There was no regret. I knew the end was how he had wanted it to be; painless and dignified.

The calm that had enveloped me continued as I called our GP and told him what had happened. He came straight over and confirmed that Paul was dead. He then said that it was his duty to inform the police because Paul had died at home. A policewoman came to take a statement. As I went over what had happened I suddenly felt overwhelmed with emotion and broke down in tears. Later a detective arrived and I went over everything again, thinking it was simply a matter of routine.

That evening, my mum, Betty, and my brother, Warwick, arrived, but I just wanted Paul. Suddenly I started to wonder how I was going to carry on without the love of my life. Mum stayed with me while I started making the funeral arrangements and answered all the calls and emails that came in telling me what a wonderful man Paul was. He was only 43. I kept reminding myself how lucky I was to have had him in my life for 10 years, even if it wasn't for as long as we both wanted.

Two weeks later, the detective I had given my statement to knocked on my door. "I'm arresting you on suspicion for assisting suicide and manslaughter," he said matter-of-factly.

I began to shake as he read me my rights. I couldn't believe what was happening. It hadn't even crossed my mind that I had done anything that could be deemed wrong in the eyes of the law. In my mind what I had done was an act of love. How could I be arrested for that? I just couldn't equate what I had done with a criminal offence.

I was told to report to Harrogate police station the next day. My stepfather Frank knew a solicitor who agreed to take me on.

I was released on bail while the police investigated further. I had to surrender my passport, and report back to the police station at regular intervals. I was also ordered not to speak to Paul's family in case they were needed as witnesses.

I kept thinking how horrified Paul would have been if he could have seen what was happening to me. It was the last thing he would have wanted. I missed him desperately, but I felt that I had to try to put my grief on hold until the investigation was over. My solicitor kept reassuring me that it wouldn't go to trial and I did my best to believe him.

The Christmas after Paul died I moved to Exeter to make a fresh start. It had been Paul's and my dream to retire to Devon, and moving there helped me feel connected to him somehow. But the combination of grief and the sleepless nights I spent worrying about the case had a terrible effect on my own health. On the first anniversary of Paul's death, I was rushed to hospital with pneumonia and spent two days in intensive care. I was prescribed antidepressants to help me cope.

Then, two months later, I was told to report back to Harrogate police station where I was charged with manslaughter. They couldn't charge me with assisting suicide because I hadn't done anything to actually assist Paul's death. Even so, I was facing up to 15 years in prison.

I pleaded not guilty and my trial began at Leeds crown court in April 2005. The prosecution accused me of failing in my duty of care towards Paul by not intervening when I realised what he had done. Much emphasis was put on the fact that Paul's illness was so difficult to diagnose. Our very private relationship was picked over for the consideration of the jury. But not once during that six-day trial did I question whether I had done the right thing or not. That gave me the strength to get through it.

I also received support from the organisation Dignity in Dying, which campaigns for people's right to choose how their life ends. My own life was now in the hands of the jury - and, fortunately, they saw how thin the case was against me. They took just two hours to declare me not guilty. So many emotions flooded through me as I stood in the dock knowing that I was free.

I felt relieved that it was all over, and angry that I'd had to go through it all in the first place. The jury all gave me thumbs-up signs and mouthed "good luck" to me as they left the court, which I found tremendously moving. This hadn't just been a victory for me; it was a victory for Paul, too.

With the trial over, I started seeing a counsellor to help me cope with my grief and I also applied to do a creative writing master's degree at Exeter University. I'm now studying for the next stage up, an MPhil in the same subject, and I'm planning to write a book about Paul and what we went through together.

It's five years since Paul's death and I still miss him terribly. Life will never be the same without him. Our story isn't an easy one. It's full of pain and disappointment, but also joy and pleasure.

Not every love story has a happy ending.

Read the article in the Guardian.

EBV Study Sheds Light on Immune Activation

The following is an extract of the latest CFIDS Newsletter, which I thought could be interesting for all you ME/CFS patients with permanently high or unusually fluctuating EBV antibody titers.

Epstein-Barr virus (EBV) was discovered by Michael Epstein and Yvonne Barr in 1964. EBV causes or has been implicated in a number of human diseases. More than 90 percent of people have been infected with EBV during childhood, but these infections are often without symptoms and disease. However, when EBV infects adolescents and adults, it’s more likely to cause disease, such as infectious mononucleosis (IM).

While EBV infection hasn’t been causally linked to CFS, we know that about 5 to 10 percent of people with IM following EBV infection will not recover after six months and will develop CFS. We also know that the severity of the IM during the initial stages of the EBV infection is the greatest predictor for developing CFS. Unfortunately, we don’t yet know what it is about the severity of the acute EBV infection that puts a person at risk for CFS.

A recent paper published in the Journal of Affective Disorders identifies pathways and biomarkers that correlate with fatigue and symptoms of chronic active EBV infection. Because of the known connections between EBV, IM and CFS, chronic active EBV infection (CAEBV) may be a useful model for understanding the chronic immune activation and the pathophysiology of CFS.

A person sick with IM recovers when EBV-specific immunity develops. However, a subset of people develops CAEBV, which is characterized by chronic or recurrent IM, unusual patterns of antibodies to the virus, severe fatigue and impaired quality of life. Chronic immune activation features similar characteristics, and the authors proposed that tryptophan metabolism—a process necessary for serotonin production and proper immune function—might be involved.

In the investigation described in the paper, 20 people with chronic active EBV infection and 10 healthy age-matched controls were studied. Those with chronic active EBV infection were examined at four and eight months.

Tryptophan metabolism was measured in each person. Investigators also measured EBV viral DNA and serum neopterin, which is a marker of cellular immune system activation.

The investigators found that the CAEBV patients with detectable EBV viral DNA had significantly higher serum neopterin and lower tryptophan levels than CAEBV patients without EBV viral DNA. Healthy controls did not show this relationship between neopterin and tryptophan. In addition, tryptophan degradation was aggravated in CAEBV patients with severe fatigue.

Tryptophan is one of the least abundant essential amino acids, yet it’s involved in a number of biological functions, including the immune response. The results of this study show that increased tryptophan degradation is associated with cell-mediated immune activation. This disturbance in tryptophan metabolism may explain the fatigue experienced by people with CAEBV, making CAEBV a useful model for understanding the chronic immune activation and pathophysiology of CFS.

Bellmann-Weiler R, Schroecksnadel K, Holzer C, Larcher C, Fuchs D, Weiss G. IFN-gamma mediated pathways in patients with fatigue and chronic active Epstein-Barr virus-infection. J Affect Disord. 2008 May;108(1-2):171-6.

Humour: quotes on science and religion.....

Science can purify religion from error and superstition.
Religion can purify science from idolatry and false absolutes.

(Karol Wojtyla, alias pope John Paul II)

There are grounds for cautious optimism that we may now be near the end of the search for the ultimate laws of nature.

(Hawking, Stephen W.)