The Fight is on...Imperial College XMRV Study

[flybro]

Martlet

My ex hubby recently had to have an operation for supra ventricular tachycardia. They said they found a heart defect that he must have been born with.

However back in the early 90's, the first GulfWar, he had all his jabs, he ended up not going. But he had the jabs.

 

[kim500]

... curtailing all activities that does not pertain the subsistence. Walk whenever I can within my physical limit. That was enough to go from "why bother" to "I could live with this".

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.

 

[JayS]

True. Are you claiming that doctors in UK don't even provide symptomatic relief medication in favor of CBT? No prescription for sleep medication if you are suffering from insomnia related to ME? If that is the case, then I'd agree with your complaint.

Something like that. Not exactly, but close in a general sense, and quite possibly exactly that on a micro scale given anecdotal reports about UK doctors' attitudes towards CFS/ME patients.

http://forums.aboutmecfs.org/showth...The-CDC-Concerns&p=12106&viewfull=1#post12106

 

[flex]

Poetsf

if you post your full details here I can take them to Simon Wessely for you. I am in the London area, it seems he may need your blood for his next load of cohorts.

 

[Martlet]

Thanks, Gracenote. I never, ever think to put searches in quotes. You'd think I'd know by now.

I know what a nasty piece of work the man is, but mostly from my Action For M.E. days, back in the UK.

What really gets me about him and his ilk is not that he thinks the cause is psychiatric, since no-one really knows the cause, but that he does not treat his patients. He seems to admit that their/our illness is real, admits that the symptoms are real and that real physiological changes occur, but he will not treat them with drugs that relieve their symptoms. I mean for goodness sake, if he believes exercise is essential to recovery, then treat the symptoms that he believes stop his patients from exercising.

Of course, I don't believe the cause is psychiatric, but if I did and if I were an MD, I would treat the bloomin' symptoms .

 

[xanadu]

Do you know which book, which chapter, SW made direct reference to this quote in one of our mails, it's apparently dogged him for many years and he claims it was taken out of context.

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").

 

[Martlet]

My ex hubby recently had to have an operation for supra ventricular tachycardia. They said they found a heart defect that he must have been born with.

I've had every possible test a cardiologist can do and my heart appears to be good and strong, but it has just developed this "extra wiring" as my doctor called it. The problem with palpitations is that by the time we see a doctor, they are almost invariably gone. So it was with mine and invariably someone would say it was "stress." Then one day I had the most awful stomach pain of my life and went to Urgent Care in my own doctor's building. The doctor there had me drink something which should have immediately relieved the pain. When it didn't, he said he suspected my pancreas and sent me immediately to the ER at the local hospital. While I lay there anxiously awaiting blood test results, they ran an ECG and voila!

When I saw the cardiologist after one month on an event monitor and all those really sophisticated tests, he asked, "Have you ever been told you have an anxiety problem?" I said that I had been told that palpitations were down to stress. "Well you don't," he said. "You have SVT but most patients with it go for years being told they are anxious." That was an eye-opener!

Anyway, sorry for rambling about me. I hope your ex recovered well.

 

[Jenny]

Something like that. Not exactly, but close in a general sense, and quite possibly exactly that on a micro scale given anecdotal reports about UK doctors' attitudes towards CFS/ME patients.

http://forums.aboutmecfs.org/showth...The-CDC-Concerns&p=12106&viewfull=1#post12106

Just for the record - almost all the doctors I've seen (and I've seen a lot) have treated me with sympathy, and been willing to listen to my suggestions for treatment and prescribe some medications on an experimental basis. I've had various sleep meds, pain meds, and lots of other experimental treatments. They've been concerned that they can't do more, and have made attempts to understand the illness. I'm in the UK.

Jenny

 

[Martlet]

Just for the record - almost all the doctors I've seen (and I've seen a lot) have treated me with sympathy, and been willing to listen to my suggestions for treatment and prescribe some medications on an experimental basis. I've had various sleep meds, pain meds, and lots of other experimental treatments. They've been concerned that they can't do more, and have made attempts to understand the illness. I'm in the UK.

Jenny, I am so glad to hear it. I have two friends in the UK who were diagnosed within a couple of years of one another - and me - and they have been as fortunate as you. Also, the first doctor I saw, although on a US air force base, was British. I had gone to him with a rash but he ignored that and asked how long I'd had cognitive issues. He said he was almost sure he knew what was wrong with me, and referred me up the chain. So I have not had a bad experience with British doctors, and neither have my friends, but in my area, there were some who got referred to a particular psychiatrist and they did not fare nearly so well.

 

[Robin]

]PTSD was just an example of not all stresses causing the disorder to all people equally. And ME being classified as a neurological disorder does not preclude it being caused by a stress: a neurological disorder can be an injury to neuro/immune system by a physical/viral stress. I think too many people are obsessed with infection model of CFS that they discount the possibility of it being a stress injury too quickly.

Right, but as has been pointed out here, if stress were actually causal, CFS would be found in populations of high trauma: residents of war torn countries, Holocaust survivors, etc. It's not. It's found in picturesque skiing villages and quaint country towns. ALL PTSD follows from intense mental stress, but not all CFS follows intense mental stress.

Further, I'm unclear about what you mean about the viral model, because you mention "viral" stress in the sentence preceding. Would that be a persistent viral infection but precluding Wessely's virus-is-there-then-it-goes-away theory?

 

[Robin]

Poetsf

if you post your full details here I can take them to Simon Wessely for you. I am in the London area, it seems he may need your blood for his next load of cohorts.

flex, be nice, OK?

 

[Robin]

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, be nice, too. You make very good points, just leave out the personal attack. Thanks.

 

[JayS]

Apologies if this has previously been posted. I saw posts linking to the thread with Dusty Miller, but not the list of discussions. Some of these seem to be pretty solid criticisms. I think I read in Cort's blog where he doesn't think a difference in cohort selection relative to McClure not using Canadian Criteria was not all that important? I may have misread that. In any case, I have to believe that this is being seen by plenty of interested parties.

http://www.plosone.org/annotation/g...?target=info:doi/10.1371/journal.pone.0008519

 

[garcia]

Just for the record - almost all the doctors I've seen (and I've seen a lot) have treated me with sympathy, and been willing to listen to my suggestions for treatment and prescribe some medications on an experimental basis. I've had various sleep meds, pain meds, and lots of other experimental treatments. They've been concerned that they can't do more, and have made attempts to understand the illness. I'm in the UK.

Jenny

Jenny you are extremely lucky. Since I first got glandular fever almost 9 years ago I haven't been prescribed a single thing for my ME on the nhs. Nada. Nothing. Zippo. Nyet. My gp has the attention span of a goldfish. Can you elaborate on what experimental treatments your gp has tried?

 

[garcia]

True. Are you claiming that doctors in UK don't even provide symptomatic relief medication in favor of CBT? No prescription for sleep medication if you are suffering from insomnia related to ME? If that is the case, then I'd agree with your complaint.

Well I haven't been prescribed anything in almost 9 years. One of the drugs I'd like to try is Xyrem. No way on earth will they let me try that just for ME. To get access to a drug like that I'd have to have hard-core narcolepsy.

 

[Alice Band]

Hi Jenny,

What experimental drugs have you had access to? I live London and would love to compare notes?

Have you been able to have a full immune system workup (TH1/TH2,NK cells, Rnase L) and tests for common viri (EBV, CMV, HHV6 etc)?

If so, would you mind saying where they were done.

 

[flex]

flex, be nice, OK?

I hear you Robin.

My apologies also to Poetinsf.

 

[fingers2022]

Poetinsf
This was my original quote in full context.

ME is a Neurological Disease as defined by the WHO. PTSD in returning soldiers is a different issue associated to stress. Gulf War Syndrome is yet again a different issue controversial for the exposure of soldiers to vacccines and poison gases( biowarfare sold to the east by the west) etc whilst many of those soldiers children are being born with neurological issues and even therir wives are showing signs of infectious disease.

Think I kicked this one off by responding to Mithriel, saying that "exercise is stress". I'd like to abologise for my lack of clarity.

Stress is defined as anything the organism can't deal with.

Potential stressors include psychological ones as well as physical ones. Someone said they think they developed ME due to Judo for a long time at a high level. My own case combined IT project management with international level triathlon - no time for rest.

We can also include the horrors of war, injury, divorce, beaeavement etc. etc. etc. as potential stressors.

My theory is that transmission of XMRV may occur when the organism is stressed, and in this situation it gets established in the cells (DNA, RNA, NK, dunno, whatever it takes). That's not like HIV/AIDS where transmisison seems to occur regardless of the state of the individual. This could explain the difficulties of XMRV transmission theories.

So, if this is the case, does XMRV cause ME? No, it is then only part of the picture, but it may form a more significant part than any old infection, as has previously been the theory.

Satch

 

[fresh_eyes]

My theory is that transmission of XMRV may occur when the organism is stressed, and in this situation it gets established in the cells (DNA, RNA, NK, dunno, whatever it takes). That's not like HIV/AIDS where transmisison seems to occur regardless of the state of the individual. This could explain the difficulties of XMRV transmission theories.

So, if this is the case, does XMRV cause ME? No, it is then only part of the picture, but it may form a more significant part than any old infection, as has previously been the theory.

Hi Satch. Or it could be that the stress (virus, injury, etc.) activates a previously latent XMRV infection.

 

[flex]

Ampligen? I suppose FDA conspired with CDC to screw CFS patients. You are assuming infection that requires drug treatment. If CFS turns out to be a physical injury to neuro/immune/endocrinal system, there may not be a drug for it.

The FDA would be nowhere to be seen in this argument, as they, along with the CDC are government departments. The CDC practicaly uses the Oxford criteria definition of CFS supplied by Wessely, so that they had to deny the whole illness and cover up for years of incompetence including polluting the blood supply. Virus has always been attributed to ME. Why did they have to deny it in the first place? Maybe because they new all about the biowarfare chemical labs in the 70s and 80s. It was even being bragged about openly in terms of the fact that they had developed bacterial agents so difficult to detect but able to disable people.

This was during the US Soviet stand of era that involved Iran Iraq and Afganistan.

XMRV is reported to be a retrovirus which means its in the DNA - it becomes you. No basic blood test is going to pick this up. Thats why basic blood tests have always been ordered.

The practices of chemical control in this era were so bad scientists working in labs will tell you they were pouring bi products down the sink.

As has been stated previously this is a historic issue.

Do you remember the South African Government trying to cover up the Aids epidemic, saying you could treat it with garlic and lemons.