• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Wessely Says: Even if XMRV Causes ME, "There's Nothing We're Going to Do About it"

free at last

Senior Member
Messages
697
Hi everyone this is my first post, Was diagnosed with ME around 94 if i remember, i sat in a room with the oh so biased prof, when i was a very ill young man, He listens a lot, but realized years later he had corks stuffed in hes ears.

He hasnt taken them out since from what i read about him. And i really thought at the time he was my friend. ( bet he makes all hes patients feel that secure ) only years later did i come to realize he just stabs them in the back when they leave. theres words for people like him, most not printable here but c??? you get the picture. ohhh a extra letter on CFS nope wrong word he he.

what goes around comes around, And i hope judys research destroys hes career. Go judy. I will be part of the WPI UK study i hope soon, and if i test positive thats one more nail in hes coffin, every positive result judy uncovers in this country, is one day closer that this man will pay for all the hurt he has done to so many terribly ill inocent people. As far as i know theres 8 nails in hes coffin already, and it wont be long before hes career is truly buried. Anyone want to give hes career a last sermon. Sorry to sound so angry everyone, but back then i really needed help, and i got him, thats scarier than the illness, and i was terrified with the illness, truly traumatized. So thanks Simon you really helped. I have a feeling the WPI really will change the world veiw on this. I hope with all my heart. No more deaf ears for the scared and sick
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
Hi everyone this is my first post, Was diagnosed with ME around 94 if i remember, i sat in a room with the oh so biased prof, when i was a very ill young man, He listens a lot, but realized years later he had corks stuffed in hes ears.

He hasnt taken them out since from what i read about him. And i really thought at the time he was my friend. ( bet he makes all hes patients feel that secure ) only years later did i come to realize he just stabs them in the back when they leave. theres words for people like him, most not printable here but c??? you get the picture. ohhh a extra letter on CFS nope wrong word he he.

what goes around comes around, And i hope judys research destroys hes career. Go judy. I will be part of the WPI UK study i hope soon, and if i test positive thats one more nail in hes coffin, every positive result judy uncovers in this country, is one day closer that this man will pay for all the hurt he has done to so many terribly ill inocent people. As far as i know theres 8 nails in hes coffin already, and it wont be long before hes career is truly buried. Anyone want to give hes career a last sermon. Sorry to sound so angry everyone, but back then i really needed help, and i got him, thats scarier than the illness, and i was terrified with the illness, truly traumatized. So thanks Simon you really helped. I have a feeling the WPI really will change the world veiw on this. I hope with all my heart. No more deaf ears for the scared and sick

Welcome, freeatlast, thanks for sharing your story with us.
I think of your story and it sends chills down my spine. I've had bad doctors and then sought out the best here in Colorado and they turned out only to be mostly disappointing. But to have Dr. Wessely as your personal doctor pretending to listen to you and care for your health..God. I get the image of that other wonderful psychiatrist, Hannibal Lecter or Dr. Mengele as your primary care doctor. Glad you're still here to tell the tale.
 

Marco

Grrrrrrr!
Messages
2,386
Location
Near Cognac, France
Yes, I've wondered alot about this- comment from our continental brethren would be most appreciated. Some psychiatrists like to talk about 'culturally bounded' illnesses- basically these guys are totally hysterical- look these are weird illnesses confined to only one culture!. .

I'm not French but I do live here. I've mentioned before that when I first met my GP he stated that In France 'we don't believe in this disease'. From this I took him to mean that there is a high level of scepticism or that they don't believe it is organic. Not too different from the UK then. There are however patient and advocacy groups for the Syndrome de Fatigue Chronique (no prizes for guessing that one) and reference is also made to Encphalomylite Myalgique. See this link :

http://www.caducee.net/DossierSpecialises/neurologie/fatigue-chronique.asp

Which contains this statement :

'L'encphalomylite myalgique a t rapporte dans de nombreux pays, sur tous les continents.' ME has been reported in many countries on every continent.

At the end of the day France is also a signatory to the WHO classification, therefore they can't just 'not have' ME/CFS.
 

Marco

Grrrrrrr!
Messages
2,386
Location
Near Cognac, France
Figures for France

150 000 personnes concernes en France

Le Pr. L.A. Jason2 confirme en 1999 cette raret des vritables syndromes de fatigue chronique. Aprs enqute conduite sur 28673 individus, les investigateurs de cette tude ont considr que :

32 personnes seulement prsentaient un syndrome de fatigue chronique correspondant la dfinition amricaine ;
45 prsentaient une autre forme de fatigue chronique inexplique ;
Et 89 prsentaient une fatigue secondaire une maladie authentifie.

Au total, les donnes de la littrature scientifique laissent penser que la frquence du syndrome de fatigue chronique se situe entre 0,2 et 2,6 %. La fondatrice de l’Association franaise du syndrome de fatigue chronique et de fibromyalgie, Mme Annick Lalanne, cite un chiffre de 150 000 personnes touches par ce syndrome dans notre pays. Nanmoins, il est difficile d’avoir une estimation exacte, car on manque en France d’tudes pidmiologiques sur ce thme. Ce syndrome est longtemps rest ignor des mdecins et cette mconnaissance a pu entraner de frquentes erreurs de diagnostic.

In summary, estimates of the prevalence of ME range from 0.2 to 2.6%. The French CFS/FMS association claim a figure of 150,000 sufferers in France.
 

starryeyes

Senior Member
Messages
1,558
Location
Bay Area, California
One of these is the UK's 'Dr Crippen' blog where the denigration and deliberate taunting of
those with M.E., Lyme and fibromyalgia by NHS GPs is common. Another anonymous 'doctor' posting there on the thread about Lynn Giderdale was encouraging M.E. sufferers to commit suicide.

I won't post the link as 'he' receives money each time anyone goes to the blog. 'Dr Crippen' also has a weekly column in the Guardian newspaper in which 'he' continues to denigrate us, and where 'he' has called us 'militant loonies'.

----------------------------------------------------------------------------------

It's incredible that a psychiatrist can his views on immunology taken as gospel by medical authorities, but it saves the UK's National Health Service an awful lot of money. Are we going to end up the only country oin the world where supposed 'research' finds no XMRV?

Thanks very much Min for this and the other link. How horrible of Crippen. How ironic that he gets paid when we click on his site. I won't Google him then, I take your word for it.

Don't worry UK, the WPI has your back!

Thanks Esther, no need to post it. I know you all are telling the truth about this.
 

Countrygirl

Senior Member
Messages
5,429
Location
UK
Below is a Wessely quote from the New Scientist which Knackered brought to our attention:

So do you think these syndrome labels are arbitrary?

"Each country has different syndromes. They don't have CFS in France; they have a strange one, spasmophilia, where a person has unexplained convulsions. In Sweden they have dental amalgam syndrome, which hasn't really caught on here. In Germany they believe low blood pressure is bad".

Any French or Swedish care to comment? Any Germans like to remark on the bizarre statement, "In Germany they believe low blood pressure is bad". Since low blood pressure can cause organ failure, what is even the point of that statement'

They don't have CFS in France? :eek:

Let me tell you a little story.

One day, when my doorbell rang I reluctantly emerged from under the duvet to answer it - often I don't because I haven't the energy to stand upright just to be bombarded by salesmen who want to:build a conservatory,rip out my kitchen, stuff my cavity walls, insulate my loft (again), change my windows or my religion. This time it was no salesman: it was a French nun in full habit. :confused: (And this is Endland remember!)

The nun asked if she could come in because she had travelled a long way (across the English Channel)and wasn't well. Sister M. explained that she had been ill for a long time and couldn't find any medical help in France, but someone had given her my name and said I could help her :worried:.

We talked about her illness, which was almost certainly ME.....for three hours ! Sister M. said that a number of other religious across the whole of France are also ill and are deprived not only of information and medical support, but that their ill-health is not recognised by their superiors. Despite their illness, and the devastating impact of PEM, they are not allowed to rest and some are forced to walk very long distances. I find their situation chilling because they are totally isolated from any help or support whatsoever. I have heard the same story from others in the same position in this country.

So is there ME in France? There most certainly is
 

willow

Senior Member
Messages
240
Location
East Midlands
I have a different story.

I was in contact with a Brit Ex pat who lived in Central France. In the Uk her dx was ME/CFS, I'd say ME becuase there was a lot of neuro involvement. Her French optician said that her vision problems were neurological and not correctable with glasses. Within 3 days her neurological referal came through and she was in hospital for a full range of tests. I think she had to pay for some of these but they were really inexpensive compared to the UK. I think her MRI was around 75... a few years ago.

She was diagnosed with inflammation of her CNS and treated with IV steroids. Not i know this is a really bad idea for many of us, immune-wise, OP etc but the short course worked really well for her and she got significant, sustained improvements.

She also said that everyone treated her very well, never doubted her or the seriousness of her symptoms, and were highly motivated to treat her.

Makes treamnet of PWME sound patchy, or was it the optician's referral that made the difference?

I've heard French parents of children on the Autism Spectrum how their children are treated by the French systems, and various stories of who dyslexia isn't taken seriously.
 

Min

Guest
Messages
1,387
Location
UK
Below is a Wessely quote from the New Scientist which Knackered brought to our attention:

So do you think these syndrome labels are arbitrary?

"Each country has different syndromes. They don't have CFS in France; they have a strange one, spasmophilia, where a person has unexplained convulsions. In Sweden they have dental amalgam syndrome, which hasn't really caught on here. In Germany they believe low blood pressure is bad".

Any French or Swedish care to comment? Any Germans like to remark on the bizarre statement, "In Germany they believe low blood pressure is bad". Since low blood pressure can cause organ failure, what is even the point of that statement?

I sent his quote to the Association Francaise du Syndrome de Fatigue Chronique et de Fibromyalgie when he made it. Their answer was that they most certainly do have it in France, 'and more and more chilkdren'.
 

flex

Senior Member
Messages
304
Location
London area
Wessely loves to play around with terminology. "They don't have CFS in France". Is that because they call it Syndrome de Fatigue Chronique. So that would be SFC presumably, which he would take to mean southern fried chicken, I imagine. The French have since countered that they dont have southern fried chicken in France because they call it poulet de Nice.

I looked a bit further into this and was shocked to find that they don't have apples in France. They have pommes. They don't have French fries they have frites. They don't have tables they have.....tables....... but they say it with a French accent. I was amazed to delve deeper and find that they don't even have French people in France but they do have les francais.


Such weird cultural differences!!! :rolleyes:

I can just see him in France with his handkerchief on his head and a whited out sunblock nose going round talking slowly and abruptly in English saying "where is the CHRONIC ...FA ...TIQUE SYN...DROME ..SIL VOO PLATE.
 

Adam

Senior Member
Messages
495
Location
Sheffield UK
Vive le France

The imagery is just too much Flex. Don't know whether to laugh or cry?
Will be having nightmares though. - SIL VOO PLATE

:tear::tear::tear::tear::tear::tear::tear::tear:
 

flex

Senior Member
Messages
304
Location
London area
Latest just in from the Wessely school:

North Italians cause CFS by sucking to hard on long spaghetti,
whilst in the south the cause is the shock element to the upper lip whilst refusing to allow the cheese on your pizza to cool down before you take a bite.
 

jackie

Senior Member
Messages
591
Flex - Dysopilant!:Retro wink: Dolkomisch!:rolleyes: Ilare!:D Ausgelassen!:tear: Vergnygt!:DHILARIOUS!:tongue: (...in ANY lanquage!)

It just gets better n' better!:Sign Good Job:


j
 

gracenote

All shall be well . . .
Messages
1,537
Location
Santa Rosa, CA
Did someone say spaghetti?

spaghetti-head.jpg
 

maryb

iherb code TAK122
Messages
3,602
Location
UK
I can just see him in France with his handkerchief on his head and a whited out sunblock nose going round talking slowly and abruptly in English saying "where is the CHRONIC ...FA ...TIQUE SYN...DROME ..SIL VOO PLATE.

I only came on for a quick browse before bed - now I'm crying laughing:tear:
thanks for that flex
 

sproggle

Jan
Messages
235
Location
Teesside, England UK
"Dr Crippen" has retired from the NHS.

He continues to blog (though his postings do not attract as many comments as they used to) and he continues with his Guardian column or at least, he had an article published last week. The blurb on the Guardian site has not been amended to reflect his retired NHS status and it's not known for how long the Guardian might retain him as a columnist, now he's no longer a practising GP.


As Min says, one of his most recent Guardian pieces had included a bash at Fibromyalgia.

"Dr Crippen's" posting announcing his retirement from the NHS is here:

http://nhsblogdoc.blogspot.com/2010/03/joys-of-retirement-bring-on-scooter.html
Sunday, March 07, 2010

The joys of retirement : bring on the scooter

"A short while ago, I retired."

[...]

"So, after much thought, and some regret, I have resigned from the GMC. I'm no longer registered. I am no longer a practising doctor and I am not allowed to practise."

"I have retired earlier than many doctors, and that has had repercussions on my pension, which is not as big as it might have been. It's hard to get 40 years in as a doctor anyway and, because I had done law before medicine, I was a particularly late starter. But I will not starve, and I am luckier than many."

"The GMC tell me I'm still entitled to call myself "doctor" - even if you are no longer registered with the GMC, they cannot take your qualifications away from you. You are still a "doctor" albeit non-pracitsing. I've never been the sort of doctor who signs in at hotels using the title, so that is of little interest to me..."

[From the Comments to the above posting]

"And it is not a spoof. I really am an ex-doctor now and have been for a few weeks. I did take several months of NHS BLOG DOCTOR a few years ago; I guess I was "blogged out" but I did not start the rumours that I was dead, or have been committed, or was being dried out somewhere. The truth was far more boring. I just stayed away from the internet for 3 months."

---------------

I understand "Dr Crippen" was a senior partner in his practice. He told his readers some time ago, that he was on a salary of 75% of 155K pa. One does not give up that kind of salary lightly, especially with four teenagers to educate.

I suspect that a political issue within his practice, perhaps relating to forthcoming changes that were not to his taste has prompted his decision to quit earlier than he might otherwise have done.


"Dr Crippen" did not do much in the way of research for his postings around ME and CFS which have been ill-informed and have often contained errors and misconceptions, as well as being intensely provocative.


Min mentions "Dr Crippen's" love of the phrase "ME militants".

In this posting, last year, following the publication of the Lombardi Science paper, he wrote:

http://nhsblogdoc.blogspot.com/2009/10/myalgic-encephalomyelitis-me-science.html

Myalgic encephalomyelitis (ME) : science, quackery & mental illness

"The militant wing of the Myalgic Encephalomyelitis (ME) brigade broke out the champagne when a recent article in Science reported that a retrovirus had been found in 67% of ME patients compared to under 4% of the general population. Sadly, the study only involved just over 100 patients and is thus inconclusive..."

in which the embeded link was for Jodi Bassett's site http://www.ahummingbirdsguide.com/whatisme.htm

It was suggested to him that rather than make assumptions that Jodi Bassett would be one of those celebrating in response to the Lombardi study, he should have first approached Jodi and her colleagues for their position on XMRV.

He made no comment, of course, and the link remains unamended.

I see a colleague of Jodi's has had a Rapid Response published (6 March 10) on the BMJ site in relation to ME, CFS, the use of "ME/CFS" and "CFS/ME", with some references to XMRV:

http://www.bmj.com/cgi/eletters/340/feb11_1/c738#232323

"The incubation period for ME, G93.3, is only approx 3-7 days, which effectively eliminates many 'causes' considered for 'CFS', including CMV, EBV, and XMRV, which have much longer incubation periods."

"Those of us who actually are ME-defined (Ramsey, Hyde) are deeply distressed by these behaviours; these illogical and unscientific approaches. By this 'highjacking' of our extremely debilitating Neurogenic disease - simply to try to make theirs "sound more serious". How unscrupulous!"

"P.S. The WPI's XMRV study was NOT done on any ME-defined (Hyde, Ramsey) G93.3, patients."​
So, I'm afraid "Dr Crippen" now has considerably more time on his hands. Let's hope he spends some of that time better informing himself around the illness before penning future articles on ME.

Someone in the comment section has suggested he might consider entering politics. :(:(:( No, no, please someone, find him something else to keep him occupied.

Your always on the ball ME Agenda. Relieved to know he's no longer inflicting himself on patients. Wish the possible political differences were the other partners wanting nothing more to do with him -can but dream!!

As for politics OMG! :eek: :eek:
Can someone get him interested in gardening or DIY or something I'm really scared!!

Now hiding under the bed....

P.S. Really gutted he hasn't got his full pension poor chap! :tear:
Jan xx