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    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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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The Fight is on...Imperial College XMRV Study

flex

Senior Member
Messages
304
Location
London area
Tom,

my sincere sympathies go out to you. It sounds like you have been through years of hell. I dont think anyone here is holding out for a cure but the scientific wheels must be allowed to motion without corruption applying the brakes. XMRV and other biomedical understanding is crucial to understanding the illness so that help can be given to the sufferers and a cure may possibly found for our childrens generation.

20 years ago if you got cancer you almost certainly died. Look how much advancement their has been in that field.

You must have been to hell and probably not back if you have been going through this for 30 years.

flex.
 

flex

Senior Member
Messages
304
Location
London area
[ The UK advocacy groups should have a database of militant somatizer MD's, and institutions associated with them. New ME/CFS sufferers should be warned, those MD's, will not help, they will harm.

This would prevent a lot of victimhood. If ME/CFS militancy were raised to a certain level in the UK, treating ME patients within the psychosocial paradigm would no longer remain attractive to the opportunist M.D.s and psychologists who exploit them.[/QUOTE]

Here, Here Levi, (English phrase for "I agree")

check my two threads on this site
1) Campaign to bring Wessely to justice
2) Letter to UK goverment, worldwide press, WHO etc etc demanding Wesselys suspension
 

Tom

windows exterminator
Messages
94
flex ---didn't want to write all that stuff , but more or less had to as an explanation. Typing with a Scottish accent means the post are laced with sardonic irony, sarcasm, cynicism and exteremely dry humour. I never know which is which .
flex and Levi Advocacy in the UK will be extremely difficult utilising the existing advocacy groups , the more I read and find out the less I find that I know where they stand.
The biggest problem is the length of time it takes for a diagnosis , 6 months +, and even during this time no mention of pacing or avoidance just in case it's M.E. I don't think docs impart info soon enough to be any benefit to patients. This is the stage or sooner that patients need to find out about what can be helpful and before they end up bedridden.
 

flex

Senior Member
Messages
304
Location
London area
I have removed my post also. Shall we start again.

Levi

I think we both agree on most of what you are saying. Lets get of on a new foot.

my idea is to have a letter addressing all the corrupt practices of the pschobablle lobby, available for download anywhere in the world and send it to Government, media and health organisations all around the world by any person who chooses to join the campaign. There are human rights issues involved here.

I think everyone wants to bypass the fake advocates now and we should get on with it. That is the 17million worldwide sufferers and our friends and families.

The Wessleian school of thought is at the helm of this and he is the individual to START on. If we bring his flawed argument out into the public arena it will be much easier to topple everyone else.

I am really putting a lot of work into this and would be spurred on by some vocal support.


Dont you agree
 

flex

Senior Member
Messages
304
Location
London area
flex,

i think we are of one voice that the system as it exists, is a travesty and violation of basic human rights. We are not geese, who would ostracise and peck a wounded or ill member of the flock for showing weakness. There are few more destructive means of attacking a person than refusing to help them in one's position of doctor, challenging their reality and trying to convince them that insanity is at the root of things, and foisting a useless and perhaps harmful regimen of treatment upon them for good measure.

Personally, my vote is for government and ruling entities to establish and deliniate a basic human right; that of the presumption of sanity. A person should have the benefit of the doubt that he or she is sane, even if there are medically unexplained symptoms. This is the basic fallacy of the wessely school. If they find no medical explanation, then they quickly default to the presumption that a patient is insane and commence tearing the patients life apart.

There is no reason for our views to be mutually exclusive, and you are welcome to my view if it is of use to you, without attribution:retro wink: By all means, well on with your advocacy work, i stand ready to support you as is permissible for me.

yeah baby!!!!
 

Holmsey

Senior Member
Messages
286
Location
Scotland, UK
What kind of medical support would you like? There isn't much doctors can do for your CFS as of now. I think CFS patients will be better off if they stopped relying on their doctors and start focusing on what works by adjusting their lives to the reality. At least till they find the cure.

I'm guessing eveyone guessed already but I'm with PoetInSF on this one, as long as there's no 'known' cause, and no 'known' cure convincing the establishment that it's not as their experts tell them it is, is just a waste of time, so for now we're on our own. I guess this is why the WPI's work is so important to so many of us.
 
K

_Kim_

Guest
I agree, Levi.

On another note, this thread is completely out of control, with parallel conversations about Wessely, pacing, PCR... I sort of wish it could be divided up, because good things get brought up and then lost in the deluge. Anybody else feel the same way?

Yes, thanks

I definitely agree, Fe. An 80 or 90 page thread is really getting out of hand. It means that people new to the thread either have to read all 90 pages or just contribute whatever they can having read only recent posts. The result is that many of the same issues get brought up and re-argued about over and over, interesting new ideas get swamped, and the original discussion gets lost because by this time, no one has read it or can remember it!
:confused:

I completely understand that this thread has become a monster. However, I've been reading it everyday, and it always seems to come back on-topic. Splitting it off into multiple threads is a monumental task, not one that I am up for taking on.

So here's the scoop: if any of you feel that a topic that was brought up here deserves its own thread, find all of the relevant posts (by post #) and PM them to me. I will copy them into a new thread (but leave the originals here as well).

I am of the mind that this landmark thread needs to stay intact - for better or worse - this is our history in the making. This is how we discuss matters of great importance as a community.

Besides, another 12 pages and this will become the longest thread in the forum. The B12 thread is 99 pages long and took 6 months to get there. This thread hasn't even been up a week yet and it's 88 pages long :eek:
 

Holmsey

Senior Member
Messages
286
Location
Scotland, UK
Poet, the problem is historical. The kind of medical care we deserve is the attention we needed when the outbreak started at INcline Village and even before that. Should the CDC have taken Cheney and Peterson seriously, thousands of us would be healthy or better off by now and wouldn't have lost their life spent in bed, unable to get disability, a job, a mate, children, etc...

The kind of care we deserve is compassion, access to testing to validate, medication for the pain, supportive care for the disabled, anti-virals for whom it's appropriate, blood pressure meds for POTS and NIH, access to disability and the budets to advance research in ME-CFS, which by now would be all sorted out. But Homes from the CDC, in 1984 came back to Atlanta and after weeks spent hiking rather than seeing Incline Village very ill pattients, reported that there was no illness to be reported, and it was all about mass hysteria.

In 2010, we need access to care. Acess to funds for research and education for ALL physicians, from family doctors to psychiatrists, including rheumatologists and policy makers. We need to ensure the safety of our family members, and the population at large, and veryfying our blood suppoly is free of XMRV. We need drugs that will rverse the damages and send us our lives back. Lots to be done.

Just my 2 cents.

Kati, I'm in full agreement with everything you say about what we should have, but we don't have it and given the buget defecit Gordon's ego has given us we've a bigger fight than ever to get it. One of the things that struck me when I signed up for this site was that there's supposed to be a quarter of a million of us, that's some lobby if you can mobilise it but we can't seem to, I don't get why that is in a cyber age. We spend nights here disagreeing, often over small points or opinions but there's clearly thousands who seem to be quite content to just go with the 'lack' of flow. Wish I knew how to pull them all together, we'd have real clout then.
 

gracenote

All shall be well . . .
Messages
1,537
Location
Santa Rosa, CA
help to manage symptoms

Originally Posted by PoetInSF
What kind of medical support would you like? There isn't much doctors can do for your CFS as of now. I think CFS patients will be better off if they stopped relying on their doctors and start focusing on what works by adjusting their lives to the reality. At least till they find the cure.

I'm guessing eveyone guessed already but I'm with PoetInSF on this one, as long as there's no 'known' cause, and no 'known' cure convincing the establishment that it's not as their experts tell them it is, is just a waste of time, so for now we're on our own. I guess this is why the WPI's work is so important to so many of us.

I have to disagree with the above. Despite there being no "known" cause and no "known" cure, many of us depend on our doctors to help us manage with symptoms. Some of us are truly incapacitated by treatable infections, pain, sleep problems, etc. and have regained some ability towards basic self care because of knowledgeable help from informed doctors. Yes, we need to find the cause and cure AND we need physicians who offer basic medical care to us based on what is already known. It's incredible that this isn't being offered to all of us right now.
 

Holmsey

Senior Member
Messages
286
Location
Scotland, UK
At the moment, a good doctor will give palliative treatment, at the very least. I rely on my doctor for:

Sleep meds - without sleep, I am much, much worse.
Prilosec - I have GERD
Metoprolol - I have re-entrant supra ventricular tachycardia.
Xanax - Taken occasionally when a particular stressor can be anticipated, as an adjunct to the metoprolol.
Pain meds - On the rare occasion that the pain is so bad that no OTC will give even a modicum of relief.

If I was somatising, then I would still need all those medications in addition to whatever else a doctor might think I need. And for the record, I would not have minded even the teeniest, tiniest bit if the two psychiatrists I saw thought I was somatising and could do something to treat me. I am not against psychological/psychiatric intervention, as long as that's what is really wrong with a person. As it is, they did not think so even when I almost hoped I was.

You've got me sitting up and taking notice, I'm kind of comming around to the idea that the biggest injustice perpetrated upon us is to throw us all under the same title, it's smacks of laziness and financial expediency...and lets put all the unknowns over there.
 
Messages
34
McClure disclose spiking results

RE: RE: RE: RE: RE: RE: RE: Results uninterpretable
mmcclure replied to mmcclure on 11 Jan 2010 at 21:18 GMT
Re spiking experiment:

We randomly chose 22 of the CFS patient samples and spiked the DNA with 10 copies of XMRV plasmid DNA. The XMRV /MLVsequences were amplified in every case. Positive and negative controls worked beautifully. All conditions for the PCR were as described in the paper.

Competing interests declared: Author
 

Hysterical Woman

Senior Member
Messages
857
Location
East Coast
I completely understand that this thread has become a monster. However, I've been reading it everyday, and it always seems to come back on-topic. Splitting it off into multiple threads is a monumental task, not one that I am up for taking on.

Big Snip

:

Hi Kim,

After I commented that I would like it split, I scrolled thru some of the thread and concluded - how in the world could anyone parse it out?? Talk about a major major undertaking, especially considering all involved are ill.

Whatever happens, I for one am still glued to this thread!!

Thanks,

Maxine
 

Holmsey

Senior Member
Messages
286
Location
Scotland, UK
I'm delighted that your illness is mild enough to allow activities pertaining to 'subsistence'. Does that include a job? Many people have lost ability to hold down jobs at all, or if they do still have a job, not enough of one to provide income adequate for subsistence. Abject poverty is not something you, me or any of us should shrug off with 'I could live with this'. Not having income is, of course, dangerous as well, homelessness not being an occupation that I would wish anyone to 'live with'. It is selfish to presume that everyone has even the level of activity that you have. Very disappointed.

Kim, I really don't think PoetinSF meant it like that, I seem to recal that he wen't on to say, 'if you can do that', I know it's not much comfort when you're at the worst end of the scale, but it is a scale and being at the high end still means you're ill, still means bits of life are snatched away, we're all suffering and as far as I can tell those who are somewhat better off than others realise how lucky they are.
 

Holmsey

Senior Member
Messages
286
Location
Scotland, UK
Holmsey

N. Sartorius (ed.) "Psychological Disorders in General Medical Settings" Hogrefe & Huber, 1990. Chapter by Wessely "Chronic fatigue and myalgia syndromes".

See this post from yesterday: http://forums.aboutmecfs.org/showth...llege-XMRV-Study&p=33178&viewfull=1#post33178

Here it is again:

'The average doctor will see they are neurotic and he will often be disgusted with them' is discussed in "More On The Myth?" by Marshall and Williams.
http://www.sayer.abel.co.uk/MES-Nmoremyth.html

Wessely in this instance was quoting someone from the 1930s, and allegedly criticising him. But Marshall and Williams show that the context was "a chapter by Wessely ("Chronic fatigue and myalgia syndromes") in which some of Wessely's most quoted and damaging statements about ME/CFS appeared". They give as examples:

"Most CFS patients fulfil diagnostic criteria for psychiatric disorder."

"The description given by a leading gastro-enterologist at the Mayo clinic remains accurate: 'the average doctor will see they are neurotic and he will often be disgusted with them'"

"It is of interest that the 'germ theory' is gaining popularity at the expense of a decline in the acceptance of personal responsibility for illness. Such attribution conveys certain benefits; in other words, there is avoidance of guilt and blame."

"It is this author's belief that the interaction of the attributional, behavioural and affective factors is responsible for both the initial presentation to a physician and for the poor prognosis."

Wessely was writing in 1990, not 1890 btw.​

Since you think he is worth talking to, you might want to ask him if he believes the other quotes were also taken out of context (i.e. "psychiatric disorder", "avoidance of guilt and blame" and "the interaction of the attributional, behavioural and affective factors").

In looking for the 'original' I kept finding the article you quote. Is Williams in this instance Margaret Williams? If so Simon Wessley claims this is a name that Kate Steward hides behind, I have no way to tell but he at least appears to know what he's talking about indicating they're quite well aquainted.

His allegation regarding this quote, and the reason I want to find it in it's original, as used by Williams is this - and I'm going to paste it as I was sent it, as SW indicates it's a statement he's already made elsewhere,

Several people claim that I once wrote about CFS/ME patients as follows
- "the average doctor will see they are neurotic and will often be
disgusted with them ". If those were my own views then one could
understand the outrage. But they are not. They were written 75 years ago
in the New England Journal of Medicine by Walter Alvarez, a consultant
physician at the Mayo Clinic. Even then, he was making the point that
doctors even at an elite establishment like the Mayo harboured
prejudices against those patients who presented with symptoms that would
nowadays be considered as having chronic fatigue syndrome. He also
continued "and yet these poor people suffer the tortures of the
damned". I used the full quote, fully referenced and in inverted commas,
in a chapter that I wrote for a WHO book back in 1990, suggesting that
not a lot has changed, and that contemporary patients with CFS still get
a raw deal from at least some of the medical profession. It is a point I
have made countless times in print and in the media. Whoever lifted that
quote will have known that my views were the exact opposite of what they
sought to portray.

I'm only interested in facts as they go a long way to establishing the credibility of any author, clearly if SW's claim, that not only was the quote placed out of context, but wrongly assigned to him, and deliberately truncated for extra effect then I'll be very carefull to avoid anything else by Williams, if on the other hand it can be proved that SW is simply in denial of the facts, i.e. lying, then I can move on and join the rest of you in condeming him, not out of hand but based on his own words.

Still trying to find the source, still trying not to pay for it!
 

Lily

*Believe*
Messages
677
I have to disagree with the above. Despite there being no "known" cause and no "known" cure, many of us depend on our doctors to help us manage with symptoms. Some of us are truly incapacitated by treatable infections, pain, sleep problems, etc. and have regained some ability towards basic self care because of knowledgeable help from informed doctors. Yes, we need to find the cause and cure AND we need physicians who offer basic medical care to us based on what is already known. It's incredible that this isn't being offered to all of us right now.

I was of the same mind as Holmsey and Poet, but have to agree with gracenote for her reasons and an additional one. In the US anyway, if you don't have a medical trail and you DO become disabled you will be very hard pressed to be granted SSDI.

It will be difficult enough anyway, but without documentation, you haven't got a prayer. At least by seeking help for symptom management you have a trail. Going through the motions, even seeking a psych eval, if/when that is suggested is a good idea.

When I finally bit the dust, I didn't have the strength or energy to see doctors and I hadn't been completely honest with the ones I did see about how sick I really was. I always gave a very stoic presentation because I didn't want to seem whimpy or like too much of a complainer. It was a mistake. A very big mistake.

When I post, I usually use very few words because of my physical and mental fatigue, but I hope you can get the idea here.
 

kurt

Senior Member
Messages
1,186
Location
USA
RE: RE: RE: RE: RE: RE: RE: Results uninterpretable
mmcclure replied to mmcclure on 11 Jan 2010 at 21:18 GMT
Re spiking experiment:

We randomly chose 22 of the CFS patient samples and spiked the DNA with 10 copies of XMRV plasmid DNA. The XMRV /MLVsequences were amplified in every case. Positive and negative controls worked beautifully. All conditions for the PCR were as described in the paper.

Competing interests declared: Author

Thanks for posting that, I had been waiting to see the result of that experiment.

Unfortunately this addresses what was one of the major weakness of the study, and the results after the experiment stand. From an objective standpoint this substantially strengthens the overall results of the IC study. If they can detect XMRV in an in vivo spike like this, then their lack of detection of XMRV in the study carries more weight. Of course there may be other confounding issues in their study, but this removes some of the doubt of their results.
 
K

kim500

Guest
What a condescending attitude to have on a forum full of people housebound and bed ridden.
Some who are unable to even dress themselves, bath/shower/wash.

At worst it's a taunt, and and best it's totally unsympathetic, and disrespectful to the plight of people with an incurable immune disease that
devastates lives, and in some cases, can kill.

Very dissapointed to see such things written on a forum of this calibre. :(

Bravo.

Fully agree.
 

Holmsey

Senior Member
Messages
286
Location
Scotland, UK
What a condescending attitude to have on a forum full of people housebound and bed ridden.
Some who are unable to even dress themselves, bath/shower/wash.

At worst it's a taunt, and and best it's totally unsympathetic, and disrespectful to the plight of people with an incurable immune disease that
devastates lives, and in some cases, can kill.

Very dissapointed to see such things written on a forum of this calibre. :(

Again, I really don't think that's how Tom intended it, for people at one end of the spectrum this is not only worth saying, it's encouraging, surely you'd want anyone who can get better to get better?
 
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