Monday, February 21, 2011

PACE trial results are out: ME is caused by an oncogenic virus

The Dr. Speedy Network of Clinical Excellence has been conducting a PACE (Properly Acquiring Clinical Evidence) trial over the last 80 years or so.

This was a miracle in itself, as we only had a budget of five pounds. This time however, we have been conducting a PACE trial including ME patients (ME stands for Myalgic Encephalomyelitis).

We have deliberately steered away from wasting billions of taxpayers money on a trial that excluded the patients that were supposed to be in the trial and which came to conclusions that were written before the trial had even started.

We used the five pounds to buy the groundbreaking book by Dr. Melvin Ramsay, which describes the outbreak of ME in the Royal Free Hospital in London in 1955. He only included patients who had fallen ill with ME. Hysterical psychiatrist were deliberately excluded before he had even started to write his book.

The answer to what is causing ME can be found in this book. The only thing one has to do, is read the book and use the thinking part of our brain. The part which harbors the Pinocchio gene, prevalent in CBT psychiatrists, is destroyed by first undergoing a few sessions of Lightning Therapy.

There are few things that stand out if you read the book.

First of all, chronic fatigue doesn't feature in this book about ME.

Secondly, a cardinal feature of ME is muscle fatigue, i.e. muscle weakness, with an abnormally delayed recovery, which can take days or weeks, after doing trivial things.

The other thing, which becomes clear straight away is that we've had similar small epidemics, always in closely knit communities. Dr. Ramsay also described the phenomenon that a few weeks after the initial outbreak there was another one, this time a lot smaller, and this continued for about 5 to 6 month after the initial one.

Straight away, one has to think about Mycoplasma pneumonia. People at highest risk for mycoplasma pneumonia include those living or working in crowded areas such as schools, Army barracks and homeless shelters. The incubation time for Mycoplasma pneumonia is one to 4 weeks. This means that it takes one to 4 weeks after catching the bug to become ill. A bit like with chickenpox, which has an incubation time of one to 3 weeks.

As if to illustrate this point, two of the very first outbreaks of ME happened in 1937 and 1939 both in the Swiss Army, affecting 130 and 73 soldiers/officers respectively.

Over the years, we've had almost 5000 research papers showing all sorts of abnormalities in ME patients.

These abnormalities are ignored by CBT psychiatrists, which means that most ordinary doctors don't know anything about these abnormalities. Some of the most striking abnormalities are a constantly activated immune system, abnormal cytokines, abnormalities in the white blood cells as discovered in September last year by Prof Newton, and mitochondrial abnormalities, which one can test for via a blood test.

So, we now know that ME is caused by a virus, with an incubation time of about 1 to 3 weeks. It's also a stealth virus, in the way that routine testing by your doctor won't find anything. A bit like doing routine testing in someone who has HIV. If you don't do the right test, you won't get the right answer.

A few more facts, that not only indicate that ME is a physical condition, but also that it is caused by a virus:

almost 5% of patients in a study of 752 ME/CFS patients developed ME/CFS after a blood transfusion.

ME/CFS subjects have a shortened life-span and are at risk for developing lymphoma

Highly increased incidence of non-Hodgkin's lymphoma in ME/CFS, or to be more precise, the incidence rate of non-Hodgkin's lymphoma is 0.02% in the United States, yet nearly 5% of ME/CFS patients develope the disease.

How can one determine which virus is causing ME? For that we would obviously need more than the five pounds we had for our PACE trial.

And then one must take the following steps:

First of all, as this is about ME, we should select ME patients and not exclude them as the CBT psychiatrists always do.

We would recommend to select a small number of patients with severe ME. Why severe ME? Because a six-year-old, with his eyes closed, can tell the difference between someone who is bedridden with severe ME, who likes to get well, who hasn't lost his interest in things, etc. and someone who is bedridden with depression for years.

These people don't eat or drink, don't respond, don't want to get well, have a mask face, and if you've seen them once you recognise them straight away. Just like severe ME this is a horrible disease, but these patients do need to see a psychiatrist, whereas patients with severe ME do need to steer very clear of one.

The second thing we would need is a team of proper virologists because they will need to do most of the work.

We obviously need a sample so that the virologists can set out to find the virus that causes ME.

Now as we all know, the E stands for brain symptoms, and it's not a good idea to start poking about in nervous tissue. However, patients who suffer from severe ME and are bedridden, suffer from severe muscle fatigue and muscle pain, the M part of ME. These are caused by a virus which has hijacked our mitochondria, the energy centres of our cells.

So the answer is pretty straightforward, we need to do a muscle biopsy from these very painful muscles. Yes I know, not something we would be looking forward to, however, as this is the place where we can find the virus, we will be more than happy to help to find this virus, which is causing this severe and very disabling disease, in our mitochondria.

We should apply to the MRC and other organisations that should provide funds for proper ME research. However, our best chances at the moment lie with the dedicated and highly motivated team at the WPI.

So please donate to the WPI even though the Count ME in event was yesterday, and even if you can hardly spare the money, every pound/dollar etc will bring them closer to finding the virus/culprit and solving this severe and very disabling disease/mystery.

And for every doctor or researcher reading this, whoever solves ME and finds this virus, you will be in line for stardom, happy patients and a Nobel prize.

See also: Harvard Medical School: EEG spectral coherence data distinguish chronic fatigue syndrome patients from healthy controls and depressed patients 
See also: The putative agent of ME/CFS can be transferred to monkeys 
See also: Almost 5% of ME/CFS patients contracted ME/CFS from a blood transfusion
See also: Cerebrospinal fluid profiles can differentiate between Lyme disease, ME/CFS and healthy controls
See also: The main characteristic of ME is an abnormally delayed muscle recovery after doing trivial things, if you don't have that, you don't have ME


Anonymous said...


Yes I sense a Nobel Peace Prize heding to WPI's DrM and Mrs A.W.

sylvieromy said...

Great post :-)

Anonymous said...

great post.

Nicky Reiss said...

This is one of your best posts ever. Thank you so much for writing intelligently and coherently at this very upsetting time.

kathryn said...

...and are all the other researchers at the NIH and CDC resenting that Nobel Prize nomination?

Excellent blog, Dr. Speedy! All the google bots will pick it up and it will be all over the world in no time!

There is no time like the present to send the to everyone you know!

Mucho gracias, again.

Anonymous said...

This is an absolutely fantastic blog, so clear, so concise, so right on every level. Just at the end of my tether, and you give me hope. My muscles are screaming, yet this article makes me want to shout "pick me! Biopsy my can have them!", seriously, thank you.

Tefalhead said...

Thanks for this and your other posters, and for keeping the story going for patients and carers, and throwing out other research that isn't just PACE Study data

Sue said...

If you want to find the answer to the enigma of ME, you have to start by using credible diagnostic criteria such as put forward by Dr Melvin Ramsay. Then when you are sure all the patients are all suffering from the same illness, start the Biomedical Research.

Thanks for making that clear, Dr Speedy. This was a great post - thank you.

Chris said...

Dr. Speedy - great post. You gave me my first laugh of the day - very therapeutic. Dr. Speedy - I think I love you ! And that should give you a laugh too ;-)

Anonymous said...

Best post so far.

Andrea Pring said...

What a brilliant piece, Dr. Speedy! You've cheered me up no end. This will no doubt tickle and delight many...funny bones as well as hackneyed brain cells.

Anonymous said...

at last, a properly conducted PACE trial

Anonymous said...

Brilliant, but what desperation and utter despair must have driven these psychiatrists to make up such a study. I just wonder, did they pay The Lancet to publish their rubbish because it would normally not pass the peer review process of any self respecting medical journal.

Might be something for you to follow up on Dr Speedy.

Maybe The Lancet should retract the fraudulent PACE trial and replace it with your excellent piece of medical research.

Thanks again Dr Speedy.

Anonymous said...


nmj said...

Dr Speedy, you are quite the comedian, you make me laugh, it is lovely. I think when you are better - and I know you will be better after some robust CBT and gym sessions - you should be one of those medics turned comics, I would pay to see you :)

I became ill during the Coxsackie B4 outbreak in west of Scotland in 80s (described in Dr Ramsay's book).

Yup, Muscle biopsies hurt like hell! I just looked at the book - I have it on my shelf - and the muscle biopsies Prof Behan did in mid-80s found 'widely scattered necrotic muscle fibres' and electron microscopy showed that 'mitochondria were shown to be conspicuously increased at the periphery of the fibres & occasional tubular inclusions present'. I wonder if any of these were mine, I was done in 1984.

Sue Marsh said...

Oh how utterly ridiculous the world of med research can be. I have crohn's and no-one cared about us at all until they realised it was same pathology as rheumatoid arthritis. That affects lots of people so "they" developed some nice expensive drugs and suddenly everyone stopped telling people with crohn's that it was "all in their head"
Don't know quite how but are there any nice acceptable illnesses similar to ME that you could piggyback the research of in the same way?
Just a thought, sorry if a naive one. (i know how frustrating it is when well meaning ignoramuses think they have all the answers....)

Anonymous said...

Hear, hear! That was an excellent use of research funds. I, myself, have diagnosed the leadership of the CAA with Foot-in-Mouth Disease this week. What other explanation could there be for those idiotic quotes given by McCleary and Vernon?

christopher said...


Anonymous said...

How do the mycoplasma pneumonia and the XMRV work together, or is that not known?

Anonymous said...

Just discovered your blog - thank you for posting so much information. Regarding the prestigious Nobel Prize, I would like to say that patients in Sweden with CFS/ME and post-Lyme and other such "problem" illnesses are most often treated like worthless garbages and left to endlessly suffer and die. I have been one such patient in Sweden and have been forced to Germany and the U.S. for help and am swimming in related debt now but have found some healing measures from compassionate, caring doctors. I have been so horrified that the world looks to Sweden for the Nobel Prize in Medicine, and yet, the Swedish medical community (at large) has abonded these patients and verbally abuses them instead. It is an absolute abuse of human rights and dignity. How can Sweden award this medical prize when Sweden knowinly tortures and abuses its own residens? How can Sweden boast about women's rights when so many of these abused, neglected patients are in fact women?! Where is the humanity that Sweden strives to be known for? Where are the human rights and women's rights that Sweden strives to be known for? Is Sweden a champion of human rights or is this just governmental rhetoric and propoganda? So many people in Sweden have no care. There exists an ideal of state-run healthcare. But right now, the reality is that state-run healthcare is supporting horrific human abuses, and Swedish residents are forced by law to pay the salaries of their abusers in an authoritarian medical dictatorship where people in white coats are the untouchable abusers. I can not respect the Nobel Prize while the county that issues it tortures its residents.

Anonymous said...

A brilliant well written truth!

aidan walsh said...

i will make a proposal today to peter white and simon 'the weasle' wessely...i offer them both a large cold glass of my blood and some cbt/get a week later for both of them...that will shut these comics up once and for all...i pity any of their children...very sad for these children...

1lito said...

<3 Best wishes. Thank you for sharing<3

Wanda Lozinska, UK said...

Great post - love the sarcasm. However, back in 1993 Dr Martin Lerner (USA) discovered that sufferers had the EBV and HHV-6 viruses in their systems, and that they could be cured with an anti-viral. More recently, Dr Montoya of Stanford University (USA) has also cured many patients by using Valganciclovir, which is available both in the USA and in the UK but only approved for use also with CFS in the USA.

However, it’s taking them years to produce useful papers which would lead to the treatment being more widely available. In the meantime, some of us are losing the last good years of our lives, losing our jobs and losing our houses!

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