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Horrifying article in Sunday Times

Gypsy

Senior Member
Messages
123
Location
USA
"In America, where ME extremism is even more virulent, doctors have been hounded out of their jobs."

I'm sorry, but WTF???? There is no ME extremism I have ever come across here!
Granted, during the XMRV debacle I am sure quite a few things were said to researchers with dissenting opinions, but please someone enlighten me to the "ME extremism" that is happening in my country. It is NOT happening because patients here are NOT (for the most part) treated the way they are in the UK. This disease is widely accepted as a real physical illness here.

And why is the press/media so obsessed with ME in the UK anyways? Is the press an extention of the NHS?

And isn't it curious that CFS is RARELY covered in the press in America, where as it is CONTINUALLY covered in the UK? Hmmm...and where are patients treated better?

"The lady doth protest too much" We get your opinion already. Move on.
 
Messages
10,157
"In America, where ME extremism is even more virulent, doctors have been hounded out of their jobs."

I'm sorry, but WTF???? There is no ME extremism I have ever come across here!
Granted, during the XMRV debacle I am sure quite a few things were said to researchers with dissenting opinions, but please someone enlighten me to the "ME extremism" that is happening in my country. It is NOT happening because patients here are NOT (for the most part) treated the way they are in the UK. This disease is widely accepted as a real physical illness here.

And why is the press/media so obsessed with ME in the UK anyways? Is the press an extention of the NHS?

"THE LADY DOTH PROTEST TOO MUCH". We get your opinion already. Move on.

I found those comments to be confusing too. Hanlon mentioned Reeves and he seems to equate extremism with anybody disagreeing with the premise that ME is psychological. Basically, if you make any comment that ME is not psychological, you are an extremist. I am not aware of any faction in the US that is 'extremist'. I am aware that all of us don't appreciate that Reeves equated ME with stress. Speaking out with disagreement is not 'extremism', not even close. I remember what went on with in eighties with AIDS before it was called AIDS. It wasn't extremism, it was about the correct classification of a disease.

I noticed that Hanlon really didn't back up his statements about extremism in the USA with any proof. It's shoddy journalism to the max.

Mike Hanlon -- if you are reading comments on our forum. Please contact me, I would love for you to answer some questions here. Let's have a mature discussion about what's really going on. Do you want to hear from some real patients who aren't extremists. Come on then -- let's have a chat.
 

SilverbladeTE

Senior Member
Messages
3,043
Location
Somewhere near Glasgow, Scotland
The UK's Establishment is desperately trying to cover up some huge and horrible crap
a whole load of "cans of worms" are coming to the surface whether they like it or not, whether they cover up lie and fudge or not.
last thing they'll want is another scandal at the same time, so as usual they'll sacrifice someone to appease "The Mob".
 

SilverbladeTE

Senior Member
Messages
3,043
Location
Somewhere near Glasgow, Scotland
Biophile
I fart, loudly, in their direction, too!! ;)
smooning_smiley_mooning_100-109.gif


Never found being polite or nice to bullies, does any good.
And that's what they are.
 
Messages
13,774
After much persuasion, I am shown a list of activists; names that crop up time and again on the ME forums. They are divided into three categories: militant, radical and active.
It is not paranoia if they really are watching you! I wonder if they have SilverbladeTE's bare Scottish arse on file too?

I bet that those dangerous militants are co-ordinating, and keeping lists of those they do not like - it's a fearsome conspiracy of sick and disabled people, targeting some of the most powerless people in society (Sir Wessely, White OBE, Sir Aylward, etc). Luckily, a brave crusading journalist like Hanlon is willing to fight in their corner, and provide a voice for those who are normally just cast aside. This would make a great movie.

lol at them keeping a list of active activists. ("It's really harassing... I have to keep making lists of people who haven't done anything wrong... they're making me do it to waste my time...") I wonder what one has to do to be classed as 'radical' or 'militant'? Make an FOI request? Ask a question, which they then choose to class as an FOI? Does one get a badge for moving up a slot?

Thinking of them having an 'active' category is really giving me some good giggles. I'd love to know the details of this list, who kept it, and who decided which name went where. What utter screw-balls.
 

Gypsy

Senior Member
Messages
123
Location
USA
The thing is, in America patients are advocating for treatment and further funds for research into a disease that has already been accepted by the vast majority of physicians as being a genuine physical illness. We advocate for further testing into subsets of this disease. Identifying pathogens, problems with the immune system, hormonal systems, sleep dysfunction, so on.

In the UK, they are still having to advocate that this IS a real disease.

How can these two countries STILL be so far apart? Is it simply because of the huge difference in the healthcare systems?
 

SilverbladeTE

Senior Member
Messages
3,043
Location
Somewhere near Glasgow, Scotland
I can just see the headlines tomorrow -- "ME patients are contributing to global warming, Wessely and his cronies are forced to add air fresheners beside their panic buttons". :D

Hey if used a match and...hm, would that qualify as a Weapon of Ass Destruction? :p

Arise ye downtrodden ME masses!
Ye have nothing to lose but your asses!
So lift yer Khybers up high, expose the passes,
And fire off mighty, thunderous gasses!
:D
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Well I had a blog showing how the UK disabled could take down the government peacefully. It was:

http://forums.phoenixrising.me/inde...fists-version-of-a-nuclear-hand-grenade.1045/

This would make me a militant? Despite that I was calling for peaceful protest not unlike the "Arab Spring" if the number dying from UK government policies got to a ridiculous level and no legal or other social recourse (e.g. petitions) was working? Or would it make me a radical? I can hardly be an activist because, well, I struggled just to get out of my unit today, and struggled harder to get back. I don't march, or engage in violent behaviour or threats of violent behaviour. Instead I emphasize reason and compassion - either of which appears to be lacking in the whole ATOS saga.

If Syria kills thirty people, ghast, NO, atrocity! It would not surprise me if the UK disability policy results in the deaths of that many every week, and yet there is not a boo from most people. Its just business as usual. The UK is an ongoing Syria atrocity with regard to the disabled, including the masses of people who are terrorized by their own government. Didn't a UK government spokesperson at one point say that governments in the Middle East who kill that many people lose their legitimacy?

So I am speaking of atrocity, use of terror as a state policy and total disregard for the mounting death toll: but its not me promoting this but current UK disability policy. I am simply wanting them to stop.

PS Or would all this make me Darth Alex to some, Jedi to others? :p

PPS In case anyone missed it, the PR blog is a copy of something I posted in the UK.
 
Messages
15,786
Thinking of them having an 'active' category is really giving me some good giggles. I'd love to know the details of this list, who kept it, and who decided which name went where. What utter screw-balls.
ME patients are either passive or active (psych) cases according to Dutch CBT ... from what I recall, you go in the "active" category if you crash regularly. Nice of "them" to keep a list :D
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
Hi Valentijn, someone who thinks critically and carefully about the article may realize all these points. However, most people won't, and there may have been a cultural shift away from critical thinking which they are relying on (this is debatable, some make this claim but its hard to find solid evidence). Or is that just readers of the tabloid press? Alex.

I'm afraid you are right, Alex. There seems to be a self-reinforcing cycle of 'dumbing-down' in this country, not least in the field of science. For example, producers seem to have forgotten that one of the founding principles of the BBC was to educate, and instead appear to target their programmes at the least-educated people for fear of going over their heads, so that whole half-hour 'science' programmes will often consist of one elementary fact padded out with a lot of repetition, waffle and silliness. This kind of approach also dominates other media. People are in turn influenced by it and become even less inclined and able to think.

It is also the case that both the printed and broadcast media almost always focus on extremes. For example, they will not want to report that thousands of people marched peacefully through London or signed a petition with reasonable, carefully-drafted demands, but they will almost salivate with delight at a few bandwagon-jumpers who set fire to something. As a result the important messages get completely lost.

I find CNN and Euronews refreshing in contrast, taking intelligent, in-depth looks at issues. Shame about all the ads...
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
I wonder what one has to do to be classed as 'radical' or 'militant'? Make an FOI request? Ask a question, which they then choose to class as an FOI? Does one get a badge for moving up a slot?

.
Maybe all us 'activists' in the UK need to submit FOI requests to ask whether we are on any of the lists held in relation to ME 'extremism'...
 

user9876

Senior Member
Messages
4,556

Yogi

Senior Member
Messages
1,132
Sonia Poulton (journalist) is responding to him. Here is his Twitter a/c.

https://twitter.com/WesselyS

She is such a dangerous militant activist and I hope MI5 and Scotland Yard sort her out for abusing and terrorising our poor victimised Simon Wessely for daring to question his authority with such questions!!!!!:rofl:
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
Just looked at Sonia Poulton's twitter account:

https://twitter.com/SoniaPoulton

and she mentions an ME CFS Patient Perspective questionnaire at 2:41 am on 5 May and a bit later, says that she's loving the responses - I'm no Twitter expert, can't provide a link, sorry.

Does anyone know what questionnaire she's talking about?