This Month’s Contents
- CDC Seminar on Pacing and Limit Setting, October 8 at 4PM
- MOLD: Could it Cause or Perpetuate CFS/ME/SEID?
- Extra Help on Prescription Costs for Medicare Recipients
- Confirm Your Appointment When Called!
- Editor’s Note – Only the News That’s Fit to Print
CDC-Sponsored Seminar on Pacing and Limit Setting
On October 8 at 4PM, Dr. Lapp, Dr. Black and Dr. Bruce Campbell will participate in an hour long seminar reviewing pacing techniques. It is highly recommended that both newbies and veterans of CFS/ME/SEID listen in and review their own approach to this very important concept. Dr. Unger will also provide a brief update on the Multicenter Trial that the CDC has been conducting for 3 years now.
The CDC developed these programs, called Patient Centered Outreach and Communication Activity (PCOCA for short!), to further engage in dialogue with the CFS/ME/SEID community. These are free dial-in conference calls that are open to anybody who wishes to listen in. Following the presentations (30-40 minutes) there is a question and answer period. The conference call is moderated and questions have to be submitted by email via the CFSPCOCACall@cdc.gov .
To participate, call into the program at 800-593-9959 at shortly before 4 PM EDT on October 8. You will be asked to give a Participant Code: 8266520. More information is available at: www.cdc.gov/cfs/meetings/index.html.
We will be making a slide set available during and after the conference, which should help in understanding some of the concepts. This can be found at www.cfidsselfhelp.org/content/CDC_talk.
We look forward to “seeing you” at the seminar!
Diagnosing and Managing Mold Exposure
[/frame_left]Could mold exposure be causing or perpetuating CFS/ME/SEID?!
A history of mold exposure is not uncommon in persons with CFS/ME or FM, but difficult to diagnose and treat. Could it be that persistent mold exposure triggers CFS/ME, or perpetuates the disorder? Lisa Petrison recovered from her mold exposures and now researches the disorder and advises other how to handle this difficult illness.
Petrison is conducting a survey of individuals affected by mold exposure, which she recently shared with me. As of August 2015, 146 individuals had responded, and she has tabulated data on 75 of those. So far, half the respondents have been severely affected (that is, housebound or bedridden) with classical CFS/ME/SEID symptoms. The survey is not complete yet, but several points are apropos to readers of this newsletter and are worth sharing.
The majority (83%) of respondents have been female. The top symptoms overlap closely with CFS/ME/SEID, including:
- Low energy and exertional intolerance
- Cognitive problems
- Disturbed or non-restorative sleep
- Flu-like symptoms or “generally feeling terrible”
- Mood disturbance
- Gastrointestinal issues
- Body pain
- Problems with prolonged sitting or standing
- Chemical and food sensitivities
A small number of individuals have also reported visual problems, seizure activity, motor issues (weakness, incoordination, tremor or tic), and rashes.
Making and confirming a diagnosis remains difficult. Ninety percent of respondents reported that their own reactions to mold most accurately determined an exposure to mold toxins. Some relied on environmental mold testing (ERMI or Environmental Relative Moldiness Index), but about 25% of these tests were normal. There are no medical lab tests that are accurate diagnostic markers for mold exposure or toxicity, but researchers believe that low levels of Vasoactive Intestinal Pepetide (VIP) or Melanocyte Stimulating Hormone (MSH) and high levels of complement (C4a) suggest toxic exposure; and TGF Beta-1 may be involved as well.
Treatments are relatively lacking, and significant improvement frequently is not noted before 6 months, sometimes 12-18 months. Participants agreed that they benefited most from “avoidance, avoidance, and more avoidance,” although virtually all admitted this was moderately difficult, and 30% reported total avoidance as monumentally difficult. About one third took a “mold avoidance sabbatical” by temporarily moving to a new location or a different home – sometimes living in tents or vehicles. About one-fifth remediated their current homes, one-third stopped going to work or school in affected facilities, and two-thirds moved into new homes. Other techniques that seemed to help were:
- addressing sinus infections
- eating an organic and/or gluten free diet
- juicing, or a diet high in raw organic produce
- seeking improved outdoor air quality
Medically, treatment with cholestyramine, B12, folate, magnesium, sweat therapy or detoxification, and coffee enemas were reported most helpful. Surprisingly, air filters did not help much at all.
Clearly the symptoms of mold exposure overlap with the symptoms of CFS/ME/SEID, and mold exposure may even be a trigger for CFS/ME/SEID. I am grateful to Lisa Petrison for bring this information to our attention!
If you have been exposed to mold and done any kind of mold avoidance, consider participating in. Petrison’s survey at www.paradigmchange.me/survey.
Other resources are:
Petrison’s blog site at http://paradigmchange.me
Standalone Forum: www.paradigmchange.me/forum/
Facebook Group: https://www.facebook.com/groups/moldavoiders/
Blog Article Summary: http://paradigmchange.me/wp/mold-avoiders/
Books: Back from the Edge and A Beginner’s Guide to Mold Avoidance
by Lisa Petrison at http://paradigmchange.me/books/
Dr. Shoemaker’s website at www.survivingmold.com
The book, Mold Warriors, by Dr. R. Shoemaker
ERMI and environmental testing: www.emsl.com
Extra Help on Prescription Costs for Medicare Recipients
Medicare beneficiaries can qualify for Extra Help with their Medicare prescription drug plan costs. The Extra Help is estimated to be worth about $4,000 per year. To qualify for the Extra Help, a person must be receiving Medicare, have limited resources and income, and reside in one of the 50 States or the District of Columbia.
For details on this program, go to: http://www.socialsecurity.gov/medicare/prescriptionhelp/
GoodRx for Prescription Savings
If you have not already discovered GoodRx, you had better get with it! Sign up at www.GoodRx.com or load the app onto your smartphone. Then when you need to pick up a prescription, enter the drug name and dose plus your zip code to find lowest prices and coupons for the medication in your area. GoodRx also offers appropriate online or mail order service, if you wish.
Some of our patients have found the cell phone app to be most helpful. While waiting in line at the pharmacy you can call up coupons on the spot! Give it a try …
Confirm Your Appointment!
Be sure to confirm your appointment when you receive that reminder call from Pam or one of the other HHC staff members. Because appointment time is so valued, it is our policy to cancel an appointment and reschedule someone else if we have not heard back from you within 24 hours of your appointment.
Well, it has been several months since the last HHC ME-Letter, mostly because there has been so little to report about CFS/ME or FM. This is a sad commentary on the current perception of these devastating disorders. I thought that the Institute of Medicine Report and the P2P Report would stimulate some “press” on our disorders, but very little came from either. Nevertheless, we at HHC continue to press on and help PWCs (Persons with CFS/ME and FM), and we will not bother you with empty news unless we find some material of perceived interest. In between ME-Letters, visit out Facebook site or private Facebook Chat Room. Just search for “Hunter-Hopkins” at www.facebook.com and your options will pop up.
Thank you for your interest in Hunter-Hopkins Center!