UPDATE: OMF: 2 ME/CFS patients needed for blood draw 11/14 at Dr. Kaufman's office, Mt. View, CA

[Mary]

I heard back from Patient Coordinator Anna Okumu today (Oct. 31), and the list of exclusions has been updated, see below post.

Old exclusion list:

Please note excluded medications and supplements include BIOTIN (!) which I think is in almost all B complex supplements. I have a call in to Anna Okumu to verify this.

Two ME/CFS patients needed for blood draw in Northern California on November 14th

If you are able to be a participant, please contact
Patient Coordinator Anna Okumu <aokumu@stanford.edu> at 650-721-5617 (10am-3pm).
One of the pilot studies we are currently running is to help evaluate a test for Fibromyalgia to see if it is positive for ME/CFS. For this particular study, we currently need 2 more patients (age <70). To participate, you will be asked to come in on November 14th to Dr. David Kaufman's Center for Complex Diseases in Mountain View, CA for a simple blood draw.
This particular study requires:
Excluded medications and supplements:
o Plaquenil/hydroxychloroquine (none for 60 days before blood draw)
o Steroids including low dose hydrocortisone and fludrocortisone (florinef)
o Biologics like Humira
o Immunosuppressive drugs used in transplantation or other treatments
o Turmeric
o Curcumin
o Guaifenesin
o Marijuana and CBD
o Allergy injections
o Cromolyn
o Biotin
o None of the above can be taken for 60 days prior to blood draw.

We are all in this together to help our loved ones and those who suffer from these diseases.
Thank you for helping us find answers to improve the lives of millions. You would be truly making a difference!
With hope for all,

Linda Tannenbaum
Founder & CEO/President

 

[Gingergrrl]

I got this e-mail and am so glad you posted it @Mary and am hoping that they can find two more people for the study! I don't qualify for multiple reasons (aside from being 7 hours south of them) but wish I did!

 

[Mary]

I got this e-mail and am so glad you posted it @Mary and am hoping that they can find two more people for the study! I don't qualify for multiple reasons (aside from being 7 hours south of them) but wish I did!

I feel the same way! I would qualify except I take biotin - a B vitamin that I think is in every B complex. I couldn't make the drive either - I even thought of driving to Burbank and flying up to San Jose and then renting a car . . . arggghh! I did this 3 years ago when I saw Dr. Kaufman. But the trip would wipe me out, plus the cost, and I'd have to get a room, etc. Dang! :thumbdown:

 

[used_to_race]

It must be so tricky for them to find patients who do not take any of these medications, live in the area, and are healthy enough to leave the house for an extra visit. I'd drive up from LA again but I am taking plaquenil. I hope they can finish some stuff soon - I have high hopes for some useful publications in 2019!

 

[Mary]

NEW EXCLUSION LIST (Oct. 31):

Excluded medications and supplements:

o Plaquenil/hydroxychloroquine (none for 60 days before blood draw)

o Steroids including low dose hydrocortisone and fludrocortisone (florinef)

o Biologics like Humira

o Immunosuppressive drugs used in transplantation or other treatments

o Allergy injections

o Cromolyn

You should not stop the above drugs and should not participate in the study.

________________________________________________________________________


None of the below can be taken for 30 days prior to blood draw.

o Turmeric

o Curcumin

o Guaifenesin

o Marijuana and CBD

o Biotin


No Vaccines within the past 60 days, including the flu vaccine.

 

[Gingergrrl]

Thanks for posting that @Mary and I really hope that they are able to find two more people. Aside from the fact that I live 7 hrs away and we no longer think ME/CFS is my correct diagnosis, I would also be disqualified b/c I take low-dose hydrocortisone (Cortef) and immunosuppressive drug (Rituximab). Otherwise I am a perfect fit {sarcasm} LOL

 

[Mary]

Thanks for posting that @Mary and I really hope that they are able to find two more people. Aside from the fact that I live 7 hrs away and we no longer think ME/CFS is my correct diagnosis, I would also be disqualified b/c I take low-dose hydrocortisone (Cortef) and immunosuppressive drug (Rituximab). Otherwise I am a perfect fit {sarcasm} LOL

Absolutely!