Thursday, 4 February 2010


Is medicine honest?
Are Guidelines reliable?
If a doctor says you can't have a pain or symptom because a blood test is negative does that make the pain magically go away?
Are all patients stupid?

These are questions we ponder when we are sick and doctors question our symptoms and illness because they don't understand. All my symptoms Arthritis, muscle weakness, Fibromyalgia, ME/CFS are not uncommon in the population but regularly dismissed by doctors even when we are severely disabled by them, how many could be caused by Lyme Disease like mine?

The guidelines our HPA follow in the UK are based on the IDSA guidelines in America. The controversy over IDSA guidelines grows and grows and just does not seem credible it is so extraordinary, certainly most people will be unaware of what is happening skewing the process that can have such devastating affects on diagnosis and treatment of thousands of people Worldwide.

'CAUGHT! IDSA violates antitrust settlement voting procedures'

Yes this was a heading that caught my attention but the news that followed appalled and frightened me.

Below is an extract from CALDA but take time to visit CALDA and read the full report.

An example of the IDSA manipulation of the voting procedure.
The guidelines mandate that Lyme cannot be diagnosed without a confirming diagnostic test.The tests are known to be insensitive and flawed. Requiring a positive test means that many patients with Lyme disease will fail to be diagnosed. One panel vote described in the AG’s letter was whether this recommendation should be revised. Four of the eight panel members voted for change, without the panel first having voted to determine whether the recommendation was supported by the science. As the AG’s letter points out, this clearly means that had the panel voted in accordance with the Settlement Agreement, this recommendation would have failed as not properly supported by the medical/scientific evidence. Why? A vote to uphold this recommendation would have required 6 votes; however, the 4 votes calling for revision (eventhough predicated on a flawed procedure) plainly indicates insufficient evidence to support the recommendation. Thus, (a) the IDSA failed to vote to determine whether the science supported the recommendation, (b) substituted its own procedure regarding revision (requiring a supermajority vote to revise), and (c) thereby manipulated the voting requirements to achieve a result in its favor.

IDSA dictates the Guideline policy that affects the World our health and welfare and our children's is in their hands!


  1. Seems to me that arrogance and egos control this group

  2. The actions of the IDSA beggar belief. Because the Connecticut Attorney General discovered conflicts of interest and other issues with the Lyme Disease guidelines produced by the IDSA, an agreement was reached by which they would be overhauled. This included how the voting should be carried out.

    Incredibly an audit by the Attorney General of minutes of their meetings etc has uncovered the fact that they have blatently failed to meet the terms of the agreement.

    Does this mean that panel members of the IDSA are above the law?

    In the UK the IDSA guidelines are followed by the HPA, so for those ill with Lyme Disease what is happening at the moment is potentially very serious.

    Like Joanne I feel overwhelmed by the arrogance of these panel members.

    I guess we have to be grateful to the Attorney General for standing up to them

  3. Joanne

    Our minds think alike. Just allowing the IDSA guideline review panel to push past the deadline for a decision stinks to high heaven.

    Renee K