Open Letter to Pat Smith. LDA Pres & Dr BA Fallon re Disgraceful Invitation to Britain's Top Deniali

Elena~
Lots of time & passion went into that letter. Have you enlisted Caudwell to help support you? If this Dr Brooks does still attend, are those opposing his attendance going show up & voice their concerns? Are there not enough ILADS docs attending this lecture that their voice & knowledge would offset any alleged damage this Brooks would do?

Does it concern you that also attending is Richard Marconi, Ph.D. who will be promoting yet another LD vax? Isn't this always part of the ($$$) agenda?

In reading the article below & many others re the continue research of bio-w labs (mishandling & mishaps, etc), it is obvious that the powers that be are just that--powerful & unaccountable.

In all these years, what makes anyone think any of this will change or that help will indeed be forthcoming to those afflicted? Who will put some infected bugs in their longjohns?

For CDC & conventional medicine's denial of this, there sure is a lot of hulaboo surrounding, i.e. DOD & their efforts to track & keep LD at bay!!:

DOD Efforts in Tick Surveillance and Preventing Tick-Borne Disease in the US

http://www3.epa.gov/pestwise/events/2011-tick-conference/6-3%20Ellen%20Stromdahl.pdf.

Post Edited (happyjo) : 11/13/2015 7:06:14 AM (GMT-7)

For me this is one of the more disturbing parts of that whole thing, when Elena states in her letter:
"Now I would like to address myself to you, Dr. Fallon.

Last year, several American ILADS doctors came to the UK in the hope of educating British physicians about the fallacy of Dr. Brooks' policies. You came here too, Dr. Fallon - but you did the opposite.

You have met repeatedly with our chief Denialist, Dr. Brooks. You have attempted to give some of his views validity.

You gained credibility years ago, Dr. Fallon, by publishing some important and insightful work on the neuropsychiatric presentations of Lyme. But that was a long, long time ago.

I wonder how many patients are aware of what you yourself have been publishing recently. Particularly since you were appointed head of the Lyme institute at Columbia University, largely financed by patients' donations to Pat Smith's LDA?

I wonder how many of the patients who donated that money or volunteered for LDA are aware that for some years now, in complete contradiction to the position that ILADS has held for decades, you have been insisting that there is such a thing as a "sensitive Elisa"?

Or that - to the delight of the Steere camp - you now claim the C6 Elisa is a good screening test?

Dr. Fallon, you know far better than I do the litany of reasons why ALL Elisas are insensitive, and should never be used as screening tools in Lyme.

Why have you sided with the Denialists on this?

In your presentation at the LDA-UK conference a few weeks ago, you championed the idea that the C6 Elisa was sensitive and could predict which patients with continuing symptoms might benefit from further antibiotic treatment.

You did this on the basis of a study you conducted involving only 23 patients taking antibiotics , all of whom, on your own admission, met the extremely restrictive criteria required by the CDC guidelines.

What made you think that from this tiny unrepresentative sample, you could draw conclusions about the utiity of the C6 Elisa for the Lyme community as a whole?

And in an interview published online, where you were asked on which diagnostic test you would reply, you stated this:

"I favor the C6 ELISA as the best screening test as it is an inexpensive and highly reproducible test that, as demonstrated by our research at Columbia, is also one of the most sensitive of tests while still being highly specific." (https://lindanee.wordpress.com/2010/12/02/ask-the-doc-interview-with-lyme-expert-dr-brian-fallon/)

It is a dangerous fallacy to say that the C6 Elisa is a sensitive test in Lyme.

I wonder how many patients know that in 2013 you co-published with lead author of the IDSA Guidelines Dr. Gary Wormser, one of the worst Denialists in Lyme history, in a work which shifts the emphasis from persistent infection to a nebulous chronic immune activation of unknown origin?

Certainly, chronic borreliosis infection can in theory give rise to chronic immune activation. But your joint paper with Wormser appears to imply something else."


It shows that we have people working against our best interests as patients - they are in our midst, working hard to be recognized as "leaders" and those that are fighting "for" us - yet are they really??? No - they are not.

So we must always be aware of who we are 'following' and getting our information from. If it's new, it must be well vetted before we should be accepting it as truth. Must we now adopt a wait and see approach now thanks to those that are looking to lead us the wrong direction so that we don't get led down a long dark trail that leads us back to the beginning again - with an infection that no one wants to even admit is here, or how bad it really is?

Oops, sorry. Just because it's confusing to me first thing in the morning for me, surely doesn't mean it's confusing for others. But I'll edit my post to be sure that I don't confuse others even more!

Just wondering if anyone here attended the LDA conference in Rhode Island?

Elena

HappyJo wrote:

"Have you enlisted Caudwell to help support you?"

I and others have been involved in a campaign to encourage John Caudwell to support Dr Alan MacDonald's research. This is quite separate from my petition and open Letter against Tim Brooks.

It is possible that John Caudwell will be deceived into believing Brooks' pretence to care about patients. In that scenario, the funds he promised to invest in a cure will be as good as thrown down the toilet, and the extraordinary power he has, as a billionaire, to get important issues into the mass media will be wasted.

If that happens, then we, the Lyme movement, will have no one but ourselves to blame. We have allowed our largest and most prominent Lyme campaigns to legitimise Brooks when he is nothing but the British version of Allen Steere. How can we expect John Caudwell, who has only very recently learned that Lyme is the cause of his family's illness, to know and understand that Brooks is a dyed-in-the-wool Denialist liar when some of our biggest campaigns are painting him as a Lyme expert?

"If this Dr Brooks does still attend, are those opposing his attendance going show up & voice their concerns?"

I think a lot of people feel very intimidated to even speak about this issue, much less physically protest during the meeting.It appears that the leadership of LDA have used their influence to silence people on Lyme forums and harass genuine activists who criticise them. This needs to stop. People need to stand up for their right to raise important issues on Lyme forums, without censorship.

It is understandable that many Lyme forums ban the mention of LLMDs' names to protect them from the ongoing harassment. But when a doctor shows himself to no longer be "Lyme-literate" - he or she no longer deserves (and generally does not need) that protection.

I had a thread terminated on another forum on the grounds that Dr Fallon is an LLMD and I must not publicly mention his name or criticise him.

The fact that Dr Fallon has departed totally from the ILADS consensus, that he now publishes papers casting doubt on the reality of persistent infection, promotes things we have known for years are harmful, like the insensitive C6 elisa and Osp-based vaccines, and engages in activities like trying to whitewash leading Denialists like Brooks, shows he is no longer an LLMD. We have every right to criticise his activities publicly.

In the open Letter, I have also described some of the disgraceful behaviour our largest and best-funded Lyme campaign, LDA - UK, has been involved in since its love affair with Brooks began.

"Are there not enough ILADS docs attending this lecture that their voice & knowledge would offset any alleged damage this Brooks would do?"

If this lecture had been part of a debate, there might have been that possibility. The programme was devised in such a way that there was no time or space for anyone to come back on the disinformation Brooks would spread from the podium. There was no Q&A either from the audience.

"Does it concern you that also attending is Richard Marconi, Ph.D. who will be promoting yet another LD vax? Isn't this always part of the ($$$) agenda?"

If you read the open Letter, you will see that I have dealt specifically with Marconi.

I have also pointed out that Dr Fallon and LDA's published objectives for the CME event included informing doctors that some "promising new vaccines" were on the cards. I point out in my open letter that most ILADS experts do not believe it is possible to make a safe and effective vaccine against Borrelia.

There is nothing in Marconi's vaccine proposal (which is being publicised by CDC) to make anyone believe it would be safe or effective. There are many indications in that proposal that it would NOT be.

"In reading the article below & many others re the continue research of bio-w labs (mishandling & mishaps, etc), it is obvious that the powers that be are just that--powerful & unaccountable....
In all these years, what makes anyone think any of this will change or that help will indeed be forthcoming to those afflicted?"

Just because the Denialists are powerful, does not mean we must throw up our hands and surrender. We do not have to resign ourselves to accepting that our lives are finished. We CAN fight back.

There are a million examples in history where people were faced with suffering at the hands of what seemed like an impossibly powerful force, and yet they were able to gain victory.

Isn't that supposed to be how your nation came into existence, by throwing off the tyranny of our King? :)
(I'm assuming you're American.)

"Who will put some infected bugs in their longjohns?"

I have never advocated violence as a solution to our problem. I advocate a mass public campaign to expose the Denialists and the shocking toll of suffering their Lyme coverup has created. A campaign based on factual evidence, not conspiracy theory - but one that does not shy away from exposing the reality of the biowarfare issue.

Such a campaign is eminently do-able - but no one can do it "for" us - we have to do it ourselves.

Here in the UK our biowarfare establishment, based at Porton (Brooks' hq) carried out a clandestine programme of WMD testing on hapless volunteers who were tricked into believing they were going to be exposed to nothing more than an ordinary cold virus, for research purposes.

They covered up the truth for decades and continued the programme, even after the so-called civilian "Common Cold Unit" caused volunteers to be maimed and killed by exposing them to chemical weapons.

Today the Unit is disbanded, the scandal exposed, and our Ministry of Defence has had to issue an official apology and pay compensation to the families of the victims. Why? Because they fought to expose it.

The compensation was nothing to shout about, and no amount of money or apology is ever going to bring back their dead relatives or cure the incurable. But it does mean that those who survived and can be helped by medical care can now seek it, and the families can have some form of closure.

That's something.

Elena

Hello HappyJo,

I was not intending to accuse you personally of weakness or acceptance of defeat.

I was speaking in general terms about the Lyme movement.

I don't think that there is specially more "sanity" or "accountability" here in the UK. Britain is notoriously secretive. The fact that we are currently reeling with the revelations of mass child sex abuse by top politicians and celebrities here, covered up for decades and only now revealed in our mass media, is a case in point.

It's always a hard fight when the powerful are determined to cover things up. But the internet makes things easier -as long as the Lyme movement does not engage in self-censorship of important issues.

This needs to be an international expose - as the coverup, though emanating from your Dept of Defense (with some assistance from Big Pharma and Big Biotech), affects people all over the world.

Elena