Is this the second coming of reeves and wessely et al

[flex]

Consider if we are worse now than before:

Is there a calculated plan that we are being lured into. Is it plan B and has it been worked on for years. "Accept XMRV then deny it causes the full range of our physical problems." Are we to be controlled and forced into Psychological assesment en mass as a whole population, then to be informed of our "sins". Is this the second coming of the "church and state". Surely we should be free to choose our own religion or belief system.


Don't forget that the CDC is still a very tactical issue, the science has been out there for years. Just accepting XMRV for whatever role it plays does not stop the psych lobby and their conspirators from saying "you also have a functional somatic disorder". This is exactly the tactic being employed by the APA for the new DSM. Reeves has only moved down the corridor on the same salary. We all have to take a look at the politics of the DSM V and stop thinking this is about good scientists versus nasty scientists

"Starting Feb. 14, Reeves will be senior advisor for a NEW mental health surveillance program that will explore how various diseases and conditions affect mental health."

It seems you will get marched out of one door in the CDC with a positive XMRV test straight into the office of MR Reeves to be given your mental health diagnosis then sent for CBT and GET because "your physical illness wouldnt cause such disfunction". Just like they say to people with Lymes disease and MS.

The science is not going to "settle" this in the CDC so that the corrupt UK and US authorities, insurance companies etc all roll over and give us a big apology. If this was purely a scientific issue it would have been over years ago and we may have all had a cure by now. I have seen this belief an unsettling amount of times now and am concerned that we are playing right into their hands as we sleep walk into another disaster.

 

[thefreeprisoner]

I vigorously disagree.
There's far too much conjecture going on in this proposition.

ME is a really complex disease. Fair enough, we should be further on than we are now, but I am not sure it is fair to say we would all have had a cure by now. It's only recently that we've got technology sensitive and advanced enough to find XMRV. And even then, it's been tricky to find.

Once you've been used to getting kicked when you're down, it's easy to expect it will happen again.

The activity, passion, organisation, intelligent debate and action going on... even among the 1,000 people registered on this forum... to me demonstrates that nobody is sleepwalking.
We are WIDE AWAKE. Our eyes are open.

Rachel xx

 

[flex]

You are both missing the point again. You obvioiusly have limited knowledge of the DSM and the forthcoming proposals. I did not and never have said that XMRV is not a breakthrough. It was always there to be be discovered. The first retro virus connection was made in the early ninetees but was run out of town by the powers that be. Rachael what is this sudden tecnology that we have just discovered: a test tube and a magnifying glass, Come on really!!

There are 5000 papers published on bio markers of ME worldwide. Many others diseases do not have a single blood test as a diagnostic definite. As for "happening again" I never said that. I never said that they could or would deny that XMRV causes physical symptoms. I never said we would have had a cure by now I said, "may have had". Judy Michovitv was talking about a year to a cure, last year. Her words not mine!!

I keep on making the link to Lymes disease and Ms. Lymes is absolutely ignored by the medical profession and MS is becoming harder to obtain a diagnosis because of politics.

Neither of you addressed the Reeves issue or the DSM V, etc.

Let me state again, the debate I raised in this thread is: ARE THE POWERS THAT BE CHANGING THEIR TACTICS.
ARE WE UNAWARE OF THE POWER OF THE FORTHCOMING DSM V

Just because we have 1000 people here it doesnt mean we are all looking at the bigger picture.

If we are going to have a debate lets all debate the same issue. We dont have to agree. At least debate the same thing.
IF THE DSM V PROPOSALS GO THROUGH ANY DOCTOR WILL BE ABLE TO SAY " YES YOU HAVE ME... XMRV...MS.....ORGANIC ILLNESS, BUT YOU ARE ALSO SOMATISING"

"Starting Feb. 14, Reeves will be senior advisor for a NEW mental health surveillance program that will explore how various diseases and conditions affect mental health."


The reason I raised this debate was to see wether people were aware of the above and the implications it could all have on us. It seems I was right to do so.

 

[Andrew]

Flex, when I heard where Reeves was going it crossed my mind that he could shaft us from his new position.

 

[valia]

I am Hypothyroid, or at least I always was, my mother and 2 sisters are too, so I have been looking into it lately thinking it could be adding to my problems.
Anyway from what I learned so far the goal posts have been moved, my tests, which they limit to TSH and T4 show that I am normal.
We now have “Post Thyroid Deficiencies” and MUS (medically unexplained symptoms)
Treatment = antidepressants and CBT/GET
As far as I am aware neither of these have ever cured any illness or disease and yet I am offered the same treatment for my Lyme and M.E of course

I have no doubt there is a plan

 

[MEKoan]

Yeah, I think this is a totally credible scenario, Flex.

And, what Andrew said.

Could happen.

 

[flex]

Khalyal

Flex, I agree
Originally Posted by flex

...you could be sleep walking into a second disaster. If they can say you have a mental health diagnosis aswell they will use it against you. What is a mental health diagnosis anyway. If you look at the DSM its anything they want it to mean. They could still use the old CBT and GET to stop insurance and benefit claims. They already try it with people diagnosed with Lymes and even MS. Insurance is insurance they just need any angle provided by the Psych "doctors".

Originally posted by Khalyal
I think we should all be alert to this regardless of XMRV.
Couldn't agree with this more. Part of what I said on my blog at http://cfsuntied.com/blog1/2010/02/0...e-cheese-whiz/ :

" Is it really over? Are we done with the Reeves era? What about the so-called Reeves Empirical? Will it be allowed to stand? And what about all of the stress-related, allostatic load, child abuse connections that have become the foundation of the CDC headset regarding CFS? Will years of misdirection be swept under the carpet, or expanded upon and incorporated permanently into the CFS lexicon?

And will we insist that Reeves be held accountable at some point, even though he has shifted out of the department? Will we still pursue congressional inquiry?"

Reeves' lateral transfer puts him in a position that still enables him to do us harm, and no longer JUST us. We could end up seeing immune diseases of ALL sorts in the psychological sector.

 

[starryeyes]

And will we insist that Reeves be held accountable at some point, even though he has shifted out of the department? Will we still pursue congressional inquiry?"

I think we have to try to do this. Good job keeping your eye on the ball Flex! We need to do whatever we can to keep the nightmare scenarios from happening to us. Later could be too late.

What can we do for actions and advocacy about this?

tee

 

[bettine]

I think that one thing will make a difference, and that is the fact that XMRV could be contagious. That would make it very hard not to give us treatments. Even the insurance companies could not possibly benefit from more and more people getting sick.

I hope so, at least ....

bettine

 

[thefreeprisoner]

A wee note here to counter the pessimism and offer some insights into the way forward:

During my first bout of ME in 2004, I believed everything I was told by my doctors. Internet research failed to turn up anything different to what I was being told.

During my second bout of ME last year, I decided to start Googling again. My first search turned up XMRV. My second search looking at XMRV a bit more deeply, turned up this forum and the first time I had heard about the ME conspiracy theories and the names of Simon Wessely, Peter White, Michael Sharpe and Trudy Chalder. I learned SO much and it really changed the way I thought about this illness. I have now decided to campaign about it. I have already put money where my mouth is and I'm thinking about practical things I can do as well.

My story is just one example out of hundreds which shows that we are doing exactly the right thing by contributing to this forum. It is working. I would hardly call that sleepwalking. Opening my eyes has been part of your job, Flex, and it is now my job to open the eyes of others. I have already told 2 parents of children with ME (who had previously swallowed the psychiatric nonsense whole) about all the things I've discovered. They were surprised.

Things are changing thanks to the power of the internet, Cort's tireless work and all the people contributing such good work to this forum. And yet people are still despairing and saying we ought to be doing more. I think that might not be as helpful as you assume, because despair leads to inaction.

We are in an information war, yes. The more me write here, coherently and intelligently, and come across as reasonable, intelligent people with an important case to make, the more people will believe us.

What we are doing here is all already part of the solution... keep going folks, within your abilities and what you know your body can handle...

Rachel xx

 

[flex]

@thefreeprisoner

That is still not on subject for this thread. I think you know this thread is not about pessimism and to be quite honest its quite a weak response. Posing the question "are we sleepwalking" seems to have been taken personally by you. The issue is about seeing and second guessing the tact of Reeves and CO. There are so many issues that will still affect us in health care etc regardless of XMRV. If you choose to call us all pessimists here, especially when there are people who have experienced doctors ignoring the depths of things Like MS and Lymes perhaps you should consider taking back such a remark.

Having just become a Moderator I'm not sure you should be addressing people in such a manner here when they have suffered and gained knowledge for many more years than you.

I would imagine they would accept the "insight" that you offer more readily if you refrained form such remarks.

Original quote thefreeprisoner
"And yet people are still despairing and saying we ought to be doing more. I think that might not be as helpful as you assume, because despair leads to inaction."
End of quote

This thread is in Advocacy Action and Alerts for obvious reasons. That's why people come here. No one is forcing anyone to "do more".

As for "leading to inaction" please go back and look at the previous posts of TEEJ and Khalyal who are suggesting ways of addressing the issues raised in this thread. Please note the difference between despair and action because of insight.

I would imagine people may take offense to being regarded as pessimistic despairers. Especially in the Wesslian climate we are all exposed to.

 

[MEKoan]

Hi thefreeprisoner,

I appreciate your goodhearted attempt to counter pessimism but I must agree with Flex that, in this thread, it is a bit beside the point.

For some of us, hitting the XMRV motherlode on only our second foray into the world of Googling what ails us is almost incomprehensible. There was no Google when I first got sick. I spent my time, futilely, in the medical library of a large university. Five years after I got sick a bunch of people got exactly what I had in Incline Village, Nevada. It would be more years until I found out that there had been an outbreak in the hospital where I was born which began one month to the day before my birth. We have been slowly and painfully piecing this together for a very, very long time. We have also, for the most part, been managing our spirits and our mood pretty well though it is not always easy.

You are a very bright woman with a lot to offer the community. While we are never happy to see our numbers grow, we are always grateful for new intelligence and insight. You have the particular insight of someone who had a period of illness, followed by a 6 year remission, followed, sadly, by what seems a pretty brutal relapse. You are pretty new to this. I say this not to dissuade your involvement but to encourage you to engage from that perspective.

Lord knows many of us are weary and we are aging and, and, and, and... but we have a lot of wisdom and some important lessons which were hard won. If we can combine the fresh enthusiasm of those newly ill with the knowledge and experience of the seasoned vet.s we will make great strides. I think we ignore either perspective at our peril.

Flex makes a good point in this thread and all the optimism in the world won't change that. We need to look soberly and seriously at the possibilities raised. We need to be ready with counter strategy if needs be. And, yes, we need to avoid despair but this is not an example of despair. This is caution born of experience. It's been 30 years for me (with a wonderful remission to 80% for over a decade) and I learn something new every single day.

Thank you for your mental and emotional energy, your willingness to engage in keeping everyone's spirits up, and for the practical skills you are about to bring to our new campaign. Everyone's perspective is equally valuable.

Peace out,
Koan

 

[kurt]

Consider if we are worse now than before:
Is there a calculated plan that we are being lured into. Is it plan B and has it been worked on for years. "Accept XMRV then deny it causes the full range of our physical problems." Are we to be controlled and forced into Psychological assesment en mass as a whole population, then to be informed of our "sins". ... Just accepting XMRV for whatever role it plays does not stop the psych lobby and their conspirators from saying "you also have a functional somatic disorder".

I do not believe there is a calculated plan. These things do evolve though and there are opportunists at all levels. I worked in the health insurance industry, and also have worked with many different govt. agencies in the US, including Federal and State, regulatory, military, educational, etc. And I have worked on medical projects also. All pre-CFS of course. Personally I think the situation could be completely different than ANY of the speculations here. The fact is that people like Reeves are reflectors of what MDs believe and what regulators above them want to see. And they are all going to adapt to the changing situation in a way that is rational to them. If we want changes to DSM or govt. policies we have to talk, and start initatives, things like that. What is going on here is very good. And the govt, the advocacy groups, the research labs, and vendors, are all watching us.

The world has changed a lot during the decades that CFS has been ignored. This is the age of Internet buzz and any angry group can cause a lot of trouble, and the 'powers that be' are well aware of that.

Also, regarding the jabs at thefreeprisoner, being a moderator is only relevant in a discussion when someone violates the rules. Typically this is because people get worked up and start writing insults rather than rational argument points. Beyond that, moderators have opinions too and can be right or wrong about any point. Moderators do not have the resonsibility to always be right or to guard their opinions any more than anyone else here.

 

[Martlet]

Having just become a Moderator I'm not sure you should be addressing people in such a manner here when they have suffered and gained knowledge for many more years than you.

thefreeprisoner has exactly the same right to express her opinion as anyone else, regardless of the fact that she is a moderator. As for insight, you don't have to be sick for decades to gain that, so thefreeprisoner's insight is as valuable as the next person's.

 

[Anika]

Keep an eye on Reeves - keep your enemy closer?

While I think we need to focus most of our attention on what happens with the CFS program under the new leadership, and try to read the tea leaves there, I think we should at least try to keep an eye on what types of projects Reeves works on, if we can.

That may be hard, because I doubt if Reeves will get much public play in a Senior Adviser role. Whether his input is really valued in his new role is a question mark. He was clearly not doing virology for a while (his supposed expertise), and will his bosses in Mental Health think much of his credentials in that area?

I don't think Reeves won many points with his bosses for some of his inane public comments. In his role as a Senior Adviser, I question whether he'll have a public voice. What we may need to be concerned about, is whether his private voice wields much influence. So I agree we need to keep tabs on that. That should be done, but should not divert the bulk of our energy.

Anika

 

[starryeyes]

Kurt wrote: If we want changes to DSM or govt. policies we have to talk, and start initatives, things like that.

We've got to combat the changes they're about to make in the DSM. How do we start initiatives?

 

[flex]

Opinion is one thing and discussion is healthy. But for the freeprisoner to come on and address people as pessimistic despairers on an advocacy thread is a gross miscalculation. She and any other moderator should accept that. I do not consider this to be "valuable insight", regardless of length of sickness.

So are we going to get an apology from her? Why should Muffin be hounded into readdressing herself for her approach, when the above sentiment from freeprisoner is hurtful and negative regardless of being a moderator or not. When Muffin wrote to IC about their practices it was part of the downfall of their fake 200 test. They appear to be withdrawing it altogether.

Should us "pessimistic despairers", otherwise known as advocates, be sent for CBT for our negative beliefs that cause us to "despair and become inactive".

 

[flex]

We've got to combat the changes they're about to make in the DSM. How do we start initiatives?

Suzy from ME agenda is in a mammoth battle with this issue and it has been suggested that she could do with some help. Any online researches or helpers here? She is regularly on this forum.



ON A SEPERATE POINT:

"Starting Feb. 14, Reeves will be senior advisor for a NEW mental health surveillance program that will explore how various diseases and conditions affect mental health."

Its the word "new" that makes me sit up in this sentence. We need to write to the CDC under FOI and ask why is it new, ask for documented evidence of its planning ie meetings etc and attendees , how long has it been planned, asssurance that CFS will not be involved, who else will be working there, how much the budget is, will Reeves be on same salary, is there an investigation into the money he wasted on CFS projects. This only needs to be done and published online by one person, let them know we are watching.I think it will need to be an American citizen that does this.

Even though Reeves is only a "Senior Advisor" here why does this new department have to exist at all, who is heading it and what is their brief. Does it tie in with the DSM V proposals, we should really watch this!

Lets keep on their tails.

 

[Khalyal]

DMS

Sorry, I am completely brain befuddled. What is DSM?

How can I help?

 

[MEKoan]

DSM is the Diagnostic and Statistical Manual of Mental Disorders. It's the bible of the psychiatrists and their associations and is used to conform diagnostic criteria in psychiatric conditions.