I just saw this new blog post today and was very impressed. Maybe some of you have already seen it. The part that really, really hit home with me was this section of it (below), which relates directly to my experiences working for years in the IC, CFS, fibro, IBS nonprofit realm. Their denial of Lyme is extreme -- you can smell the fear! There are nonprofits that actually get offended and silent when you even mention Lyme:
Potential impact on disease charities;
There are many charities built around diseases that may in fact be misdiagnosed Lyme disease or caused by Lyme disease. This is a multimillion dollar business and to name a few examples, includes The National Fibromyalgia Association, The National Multiple Sclerosis Society, the Parkinson’s Disease Foundation, and The ALS Association. For example, the National MS Society tax statement filed with the IRS shows over $109 million in 2008 income. Foreign MS Societies are not included. The ALS Association shows over $50 million in revenues for 2008. The Arthritis Foundation states revenues of $133 million in 2007. In 2001, Allen Steere, one of the IDSA Lyme guideline authors, was honored as a “Research Hero” by the Arthritis Foundation.
While the MS Society, for example, has suggested screening for Lyme disease, the cheap and unreliable ELISA test is used and probably is not consistently done. As far as is known, none of the other disease charities suggest any screening for Lyme disease.
If Lyme disease was found to be the causative factor of a significant portion of these syndromes, charitable funding for these organizations would suffer a significant drop.
Here is a link to the entire blog post -- really, really on the money:
Chronic late disseminated Lyme disease (diagnosed 8/05, IGENEX, clinical). I have had most of the following symptoms/syndromes for two decades or more:
Various upregulated central nervous system issues; EM rashes; Eczema/atopic dermatitis sometimes w/ Staph A (MRSA) (chronic/cyclical since 1998); Increasing cognitive dysfunction (brain fog, short term memory loss, etc.); Severe insomnia; Tinnitus, visual disturbances (severe eye pain, increased floaters, twitches); extreme dizziness that has gotten worse in the past couple of years; Trigeminal neuralgia; Temporomandibular joint disorder; bruxism; Interstitial cystitis; Pelvic floor dysfunction; Vulvodynia; Irritable bowel syndrome-C dominant / persistent constipation and chronic nausea; Fibromyalgia/chronic fatigue syndrome; Multiple chemical sensitivities; Herpes zoster (shingles)/Post-herpetic neuralgia; Osteoarthritis (hips – especially right hip, hands, coccyx, and knees); Panic attacks with agoraphobia since early 1980s; Post-traumatic stress disorder;
Paroxsymal supraventricular tachycardia; Fibrocystic breast disease; PMS/severe dysmenorrhea, cramps; Severe seasonal allergies and sinus issues; Many food allergies; Heavy metal toxicity & allergy