Horror Story

I have in mind a horror story.

Imagine a world in which an insidious disease creeps through the population. It defies conventional medical techniques, baffles the medical community, and it creeps so slowly that it is hard to even be sure it is a pandemic. Those who investigate frequently find nothing, decade after decade, and those sick with it are ignored by doctors because they frequently find nothing wrong using routine tests.

These sick people are very much like zombies, but to avoid alarming the public nobody ever uses the term.

Some researchers do discover pieces of the puzzle but they are ignored because nobody cares that two people, two hundred people, then two million people are sick. It breaks the twenty million mark and so very few care even then. One person in 250 is sick, many of them unable to work. Disability rates soar, suicide becomes common amongst the sick, and still nobody cares.

Even young children are becoming sick, and this illness is often for life. Most of those who "recover" are still unwell just not as sick as before, and many others die young, some from rare diseases that seem to be common in this group.

Recovery is confused with diseases with similar symptoms, in which people do recover. Patients are routinely told they will recover soon, year after year, decade after decade, yet they remain ill. Insurance companies refuse to honour their policies because nobody can figure out what is wrong with them.

The billions spent by governments on supporting these people are grudgingly given while the governments spend nothing or next to nothing on treatment or on research. Meanwhile advanced economies are losing tens of billions in lost productivity ... and still nearly everybody does nothing. Without even the research funding of minor diseases it creeps along, disabling millions more people while the debate of bothering to stop it continues.

This disease is so insidious that many who are sick with it do not understand how sick they are. They think they can do things, but discover when they try that their health collapses and they can do almost nothing for a time. Still they push on, trying and crashing, over and over and over.

Some are locked away in psychiatric institutions, where obsolete unproven theories are used to justify ineffective and draconian treatments that more resemble torture and psychological abuse than medicine. Experimental and dangerous drugs are used on them against their will in the hope that one will work. These theories are promoted using research that does not use any internationally recognized and validated techniques appropriate to this disease, but nobody knows or cares because it has crept on so silently that nobody noticed.

Sick children have been taken from their parents and subjected to the same draconian abuse and torture as adults. This is all state sanctioned, medically sanctioned, and these children have few legal rights.

Government committees make recommendation after recommendation, year after year, on how to fix this situation. Years and decades pass but nothing much happens.

This would be a nightmare scenario. Somebody could write a book about it. The problem is its REAL. The disease is Myalgic Encephalomyelitis, and it has been known to be blood transmissable since 1955. In some studies nearly one third of patients who have it have had a blood transfusion. There are tests but none are recognized as diagnostic. If you want to read a book about it I recommend Hillary Johnson's "Osler's Web".

Alone, ignored, the typical severe patient is in daily pain and torment, but is denied even basic medical care in many cases. This is not the third world. Its not some Siberian gulag or dictator's prison, its New York and London and Sydney.

This is a disease in which the latest definition lists mild cases as disabling, and very severe cases are totally incapacitated requiring constant care. Its a disease in which a major defining symptom is a severe exacerbation after only minimal physical, mental or emotional effort. This is a disease in which those who try hardest to get well often suffer the most, because the effort of trying makes them sicker. While few die quickly from this disease, people do die, and life expectancy seems to be decades shorter than the general population.

When will this change? How can we make it change? There are millions of us but we are too sick to occupy the streets in numbers, to march in protest or do all those things that others can do to change the system.

Recently I was conversing with an advocate called Kati:

She said something interesting in our exchange: we can't occupy the streets, but we can occupy their conscience.

We need to end the horror story. We need this disease to be in the minds of everyone who has any compassion, any capacity for conscience. We need it in the minds of business executives who are losing money, losing valued staff, and paying higher taxes as a result. We need it in the minds of politicians who are neglecting the sick in their constituency. We need it in the minds of doctors who do not see fit to stay up to date on the latest research. Lastly, we need it in the minds of legal firms, because the day will come when class action lawsuits may become the norm.

Thank you for reading this far. Please spread the message. I know this is well know to most on this forum, but Google searches may find this too.

Still struggling, still fighting, Alex


Thank you Alex, great blog post!

Never, ever give up fighting. In fact my dr says that even if you think people don't hear your message, you are still making a difference, one person at a time.

it takes a village...

Great post, very true and powerful. And I'm a big believer in that people who search the net will read our posts here, even members of the press.
Thanks Alex, you always get it right. I do think we are making progrees even with all the bumps in the road. It is sooooo slow though!
Thanks everyone. We are making progress, its just slow. Its science thats driving it too - as the core researchers around the world systematically reject the old dogma and outdated theories, this can only improve. The shape of the CFS is psychiatric/ME is physical debate has many of the hallmarks of the tobacco debate or climate change. The shift will occur to a large degree because the scientists involved are becoming better communicators. Up until recently the biopsychosocial adherents were communicating their message more effectively than the immunologists and other bioscientists. We also have sterling efforts by psychologists who realize there is a problem. Its important for doctors, especially psychiatrists, to get off the fence and become political - do the hard investigation, put that medical degree to use on this issue, and re-evaluate the science, rather than regurgitate outdated dogma. Then promote their re-considered view.

My message: support our scientists!

Couple suggestions for your sequel.

Consider doctors that have tried to create education programs but have been shunned and punished by the hosiptals they work for (Dr Friedman).

consider the changing definition of Me to CFs in the late 80's which makes it impossible to study and treat core disease.

consider the advocacy organazations that take money from patients but accomplish nothing.

consider governmetns reccommending treatmetns that harm (GET) (nasty prescription drugs that damage liver and stomach)

consider constant propaganda in the news and jounrals that highlight all the negatives around research and leave out the positives.

consider statements that discredit and denies new research findings before research is done.

consider scientific concensus created by small co-opted group hired by Elites,that is way out of line with informed patient community.

consider the lead government HGRV researcher is closely tied to and making movies in hollywood?

consider it's all not an accident and everybody is waking up in masses.....

very strange zombie propaganda to add insult to injury...

Well written Alex.

When u put it like that its absolutely unbelievable that we still dont get adequate help.
Quite how most doctors cannot tell the difference between someone who is genuinely severely ill, and someone who just thinks they are tired is beyond comprehension really.

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