We wanna know why Government don't spend money to CFS research?

[erin]

Since when governments are interested in human well being? Never. Maybe more interested in human control/ population control.

 

[sorin]

why?
It's really weird.

When you have no logical explanation for something is easier to say that thing does not exist. This is the good assumption. The bad assumption is that when because of your uncontrolled experiments millions of people suffer and die you are still interested to hide the dirt under the carpet.

 

[SilverbladeTE]

Since when governments are interested in human well being? Never. Maybe more interested in human control/ population control.

As jaundiced as I am, still, that's not exactly true.
Government is like several hundred brains trying to control a few VERY big hands.
The brains squabble, some of the brains are stupid, many get corrupt over time, the few decent ones get drowned out in the mess

another factor is the *bureaucracy*. in previous analogy it would be the nerves and muscles attached tot he big hands, powering and guiding them

too many folk want to believe only *their* party is the "good guy", same with their "country" (in world affairs)
total absolute rubbish.
Alas, Human Nature, being what it is, Humans in groups nearly always tend to be a dive to the bottom of the moral/intelligence pool, regardless of "flavour" or type.

Lot of good was done in politics after World War 1 and 2, and at certain other times when reformers managed ot hammer through improvements. It is VERY wrong to assign "government = automatically useless/evil"
But, without hard even vicious (in a certain sense of the word) oversight at times, you get complete a-holes making a complete mess of things :/
Hence at the moment, the UK and US "governments" , in general, are complete messes.

But you also have to understand some of that mess is DELIBERATE damage and nastiness, designed so scum can sell off parts of the government for their own benefit to amoral traitors who'll destroy their nations for profit
and some of it is to wreck any respect by the populace as a deliberate toll to destroy Representative Democracy by traitorous scum who want to rule as tyrants (Corporate Fascism is the biggest threat to our nations, not Moslem Extremism, and those corporate gits are NOT "Capitalists", huge difference, for all they try and pretend to be otherwise!)
And some of it's put through by traitors politicians who sell out to the likes of health insurance companies etc to destroy people like us who are "nuisances" or for sheer arrogance and evil of those involved (Eugenics, aka, Biosocial Theory of Illness)

Very dangerous people want us to eschew moderate Rule of law and Democracy.
Osama Bin laden etc are jack squat damage/risk to our countries compared to the likes of Rupert Murdoch, the energy, pharmaceutical and armaments corporations, and the bankers

 

[erin]

@SilverbladeTE, I disagree.

Unlike yourself I don't believe any good was done in politics after World War 1 and 2. Those wars were planned on purpose so the imperialist agenda could settle further in. That's what happened after those wars and happens every war.

Governments are large machines to manipulate and control masses.There are number of very good human beings part of this machine, they are used and they believe in the government the way you do. They, and people who knows them, sees them tend to believe the governments are interested in human well being.

I don't intend to get political further, I felt I had to answer somehow.

 

[SilverbladeTE]

@SilverbladeTE, I disagree.

Unlike yourself I don't believe any good was done in politics after World War 1 and 2. Those wars were planned on purpose so the imperialist agenda could settle further in. That's what happened after those wars and happens every war.

Governments are large machines to manipulate and control masses.There are number of very good human beings part of this machine, they are used and they believe in the government the way you do. They, and people who knows them, sees them tend to believe the governments are interested in human well being.

I don't intend to get political further, I felt I had to answer somehow.

Fair enough
if wanna gab about such stuff send me a message?


I will make one note though for everyone to think on:
the Law of Unintended Consequences
while about every war, ever, has been huge robbery to steal other folks stuff, using an excuse, and the dreams and expansions of "empires", they can have beneficial consequences, even when totally not intended
One of the things that actually got some of the war mongers, or imperialists or just plain sensible "conservatives" to support, even tacitly, the founding of the NHS was the fact the state of the health of the people of Britain was so horrible that a third of it's men folk were unfit to serve in the military, because 2 centuries of grab ass greedy stupid short sighted industrialization and extreme profit making had turned our urban populace into disease wracked, sick and broken spectres of what they had once been.
And turned our urban areas into polluted hell holes.
of course, it's always easy to blame the victim, so the arrogant gits blamed the urban poors' woes on the poor folk themselves, lambasting their venality depravity and stupidity, while the rich kept brothels for themselves, opium dens and much worse sins all hypocritically hidden.

World War 2 *did* have some beneficial consequences, namely the British National Health Service and Welfare system. Most of the ordinary folks today would even *exist* otherwise, as their parents may have died etc and in general, health of the country would be vastly worse.
of course, there are many negative, even catastrophic "unintended consequences"
The forces that drove our nations into actually BEING "modern nation states", for example World War 1 forced the British State to take over control of many things, and actually get them working, rather than keeping them as the utter shambolic messes they had been, at one hand gave the State huge power...but power....can be abused, misused or screwed up.

It may seem trite but it is absolutely true that "with great power, comes great responsibility"
Human Nature though results in most "groups" being run by useless elitist assholes in ANY system.
Wessely etc are contemptible assholes, they have abused their power, I just hope one day they get a fair trail and jailed for life or sent to firing squads along with lot of the Elite

So, we M.E. sufferers are todays "whipping boys". for a whole bunch fo reasons, from sheer short sighted stupidity, to outright diabolical evil. "Eugenics" is back, whether folk want to believe it or not.
But having lots of sick folk not helping society grow...is catastrophic loss and one we Human Beings cannot afford.
Note I haven't done any art in a while, I *can't* any more, just like we've lost the services or output and sheer "life and joy" of God only knows how many scientists, researchers, engineers, carpenters, electricians, writers, painters, etc.
"Unintended Consequences...."

Older I get and more this damn illness ruins my empathy and temper, more I feel utterly merciless towards those who've been ruining our people, our countries', our *species* well being :/

 

[unknown virus]

Drugs like Rituximab are about out of patent world-wide. Pharma does not have the financial incentive to really deliver it. Yet with one drug demonstrated to be effective (if that happens, ask me this time next year) they will see a market open, and start looking at other things.

Hi Ales, which drug was demonstrated to be effective? Thx

 

[alex3619]

Hi Ales, which drug was demonstrated to be effective? Thx

No drug is demonstrated to be effective. This is why I suggested ask me next year. The Rituximab results are expected to be unblinded in October, so we might learn more in the months after then, though probably only a brief statement until a paper is released in 2018.

However the drug Ampligen is currently approved in Argentina, though its more a treatment than a potential remission inducing drug.

 

[unto]

why?
It's really weird.

I agree with the majority of your posts ......
But I believe an important responsibility is to be attributed to people with ME.
Let me explain: I am assuming that this disease is caused by viruses and that the majority of patients (more or less) it is

why?
It's really weird.

 

[unto]

Aware ...... so if many sick people had said to the doctors and the forums (what we said two of us and a few others), we might have changed the history of ME and today you could assume effective therapies

 

[unto]

I feel I can do Also a consideration (without being Considered misogeno): It is Said That the female population is affected mostly by the ME ..... However That known to have had the courage to admit That they have infected other people are only men

 

[MEMum]

Hi Ales, which drug was demonstrated to be effective? Thx

A pilot study by 2 Norwegian canacer doctors (Fluge and Mella) showed that 33% of patients improved significantly, 33% recovered and the rest no response, on Rituximab.
The responses took several months to happen and many relapsed after time and needed more doses. There are forum threads on their findings and they have spoken at UK and other international conferences.
Their 3 year, double blind, placebo controlled trials will end and be unblinded this autumn. Then they will start to analyse the results. They and others, are trying to work out why some respond and others don't. Rituximab kills off B cells, so could be something to do with autoimmunity. They are also researching other drugs and metabolic changes in ME alongside this trial.
Until those results are out we just hear anecdotal info about those obtaining it privately. US results seem disappointing,
Some really good stories from Norwegian individuals. Info on these from Deleder and Marky 90, who are Norwegian and I think Deleder is on the trial...
As well as cancer/lymphoma treatment, Rituximab has been used for treatment of rheumatoid arthritis for over 20 years. It was first trialled by Prof Jonathan Edwards who is now retired from clinical work, posts on PR quite regularly and is "medical/science adviser" or similar to PR and Invest in ME. The latter organise the annual London research conferences.

 

[ScottTriGuy]

I feel I can do Also a consideration (without being Considered misogeno): It is Said That the female population is affected mostly by the ME ..... However That known to have had the courage to admit That they have infected other people are only men

Perhaps its a language thing, but are you saying that the only reason men get ME is through sexual contact with women?

 

[SK2018]

Because anti depressants and talk therapy is cheaper than Rituximab and plasma exchanges.

 

[alex3619]

Because anti depressants and talk therapy is cheaper than Rituximab and plasma exchanges.

If the phase 3 Rituximab trials work as expected we will have powerful ammunition for advocacy to push for treatment, more science, and better bureaucratic handling of patients. Until then we have no proven therapy aside from Ampligen which is not a cure and harder to advocate for. Dangling a cure will be powerful incentive for a lot of the players though the psychobabblers will hate it.

PS A cure is a lure.

 

[unto]

Perhaps its a language thing, but are you saying that the only reason men get ME is through sexual contact with women?

No no; when a person is' sick man or woman (I believe) can be transmitted to others through body fluids

 

[unto]

I wanted to say: Although women are affected in greater proportion than men, are only a few men who have the courage (or need) to admit
To have an infectious disease and, unfortunately, to have infected other people

 

[erin]

I thought ME is infectious only if one has a genetical predisposition?

 

[unto]

I believe that ME is an infectious viral disease, no matter who is sick (man, woman, black, white ..., poor, rich) mainly transmitted in the family \ relatives \ friends with saliva

 

[erin]

I believe that ME is an infectious viral disease, no matter who is sick (man, woman, black, white ..., poor, rich) mainly transmitted in the family \ relatives \ friends with saliva

I never understand the transmission with saliva. I have it nearly 12 years and no one in my family has got it yet. Thankfully! I did not think it was highly contagious, am I wrong? How long approximately one needs to expose to this virus? Some people get it straight away, it takes many years for some family members to have it? Why? Does anyone know?

I thought you need to have a certain mutations present in your DNA for virus to take its horrid effects on the person. Or the mutations occur after the virus enters the body? What do we know about this virus?

I read many threads and posts and still don't understand. It must be my ME ridden brain or just plain stupidity...

Oh, I'm glad the virus doesn't care about whether one is black or white, rich or poor, man or woman... A very p.c. virus.

 

[alex3619]

I believe that ME is an infectious viral disease, no matter who is sick (man, woman, black, white ..., poor, rich) mainly transmitted in the family \ relatives \ friends with saliva

There is no good evidence this is the case for ME, aside from the initial infection. The unknown virus thought to be in China and possibly elsewhere by now might or might not be a similar disease. There are however some infections that might reactivate in ME and so be transmissible for a narrow window of time. There are definitely transmissible viral and other infections that might cause ME, but again once the infection is over there is no good evidence of transmission.

In most married ME patients even decades of close contact with family does not transmit the disease. There are however some cluster outbreaks where many family members get sick. One was tracked to a genetic disorder. Other cases include up to seven members (the highest count I am aware of) getting the disease, but this was also across generations, including grandparents etc.