Is there a guide for doctors, noting clinical research and advising on tests?

wciarci

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My doctor is not up to snuff. Hasn't heard of XMRV. Doesn't test me routinely for NK, infections, or anything else. I keep trying to make appointments in Boston but would love to just him something, something written or compiled with abstracts from reputable scientists with a list of useful tests and treatments. Something that combines what Klimas, WPI, Cheney and Peterson have found. Is there such a beast out there and if not, could it be done?

Wendy
 

gracenote

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I have a collection of abstracts that just point to the medical aspects of ME/CFS. I'm trying to expand it. As of now, it does not include dates or journal titles, or web links. I intend to begin a thread with it soon.
 

wciarci

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Great replies, Gracenote, what an undertaking, I am impressed. Hoping, thanks for the link as well as Kim. I am not well enough yet to sort through this, but I will, I just thing that a manual with scientific backing and suggestions for tests would be a good thing. I know that my doctor won't read any thing other than scientific journals or such. I think it would be great if we could package all this research into a manual of sorts, so that the disbelievers wouldn't have an out. I am also thinking of Dr. Yes here too. I have compiled a notebook of research etc, but my doctor won't look at it. Perhaps Dr. Donnica? Really, I think we ought to consider this as a mission, but there needs to be a reputable doctor or scientist behind the manuscript. Just voicing some ideas.

Wendy
 

wciarci

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Kim, just started to read your link, not what I am looking for, too descriptive and anecdotal, at least in the beginning. Doctors don't have much time or patience for reading. It must really cut to the matter, so to speak, and the index must be very curt and factual, for X page xyz, etc. I know my doctor wouldn't read it. I don't even want to read it. Don't get me wrong, I appreciate the link and suggestions, just trying to be a devil's advocate.

Wendy
 

gracenote

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wciarci,

Here is a copy of what I'm working on. I pulled together these abstracts to include in a binder for healthcare providers, including psychotherapists and body workers. Let me know what you think. I'm trying to find a form that is easily useful. (I also have some abstracts put together on XMRV, not included here.) My intent was to let everyone see at a glance that ME/CFS is a MEDICAL issue.

I've used the following headings:

Immune System
Viral and Bacterial Infections
Cardiovascular System
Exercise
Symptoms
Support Strategies
Causes of Death

I still want to fine-tune this, add abstracts and categories, include a title/contents page, and maybe rearrange everything. This is my start. I will begin a thread in the next day or two.

View attachment MEDICAL ABSTRACTS..pdf

Feel free to use any part of this if it is helpful.
 

wciarci

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Gracenote, Yes! Perfect! This is exactly what I am looking for. I don't have time to read it through this morning, so I'll take another look this afternoon. It looks like there is a section for suggested treatments? The binder I put together was too long for my doctor, so this is much better. Thanks a lot!

Wendy
 

JT1024

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Gracenote...

Thanks for this binder idea. I think we all need this type of documentation when we deal with uninformed doctors.

For the treatment section, I would love to see some type of practice guidelines developed by the leading doctors (Klimas, Peterson, Cheney, Bell, Lerner, etc.). I know the term guidelines gets some people all up in arms but it is what is needed. It is really crazy for doctors to guess at what works and what doesn't when doctors at the forefront of research and treatment have been already "been there, done that".

With your headings, I'm sure we could all fill in the gaps with references over time. This is where the Phoenix Rising Wiki could come in handy!

I know I saw a reference about critical supplements recommended by Judy Mikovits. CoQ10 was one of them. I've since learned that Dr. Klimas has her patients take ubiquinol, the active form of CoQ10.

Given that I am still working full time to support myself, I have very little time to compile all this info but will do my best to start compiling.


Thanks again for this thread wciarci and everyone else's contribution!

~ JT
 

JT1024

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Information for Doctors - Work in Progress

More thoughts on your outline gracenote:

I Symptoms

II Systems Effected

A. Cellular
1. Mitochondria

B. Immune
1. Infections

C. Neurological
1. Orthostatic Intolerance
2. Balance
3. Neuropathies
D. Endocrine
E. Cardiovascular
F. Gastrointestinal

III. Treatments

A. Pharmaceutical
1. Fatigue
2. Sleep
3. Pain
4. OI/POTS
5. Antivirals/Antibiotics

B. Diet
1. Gluten Free
2. Detoxification

C. Supplements

D. Physical Therapy/Exercise

IV. Support

A. Physical
1. Medical Equipment

B. Financial

V. Cause of Death

Let me know what you think..... ~ JT
 

gracenote

All shall be well . . .
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Thanks, JT.

I've printed out your list. It looks good AND I'm in one of those brain spaces where it makes no sense to me at the moment.

gracenote step away from the computer, put the mouse down carefully, wait for brain to return.

Please contact me again if I fail to come back on my own.

:tongue:
 

wciarci

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Great replies and suggestions, I think if we could get this in a download-able form we could all benefit. I am tired at the moment and can't really contribute that much, but perhaps this weekend could put in my 2 cents. Thanks to all

Wendy
 

SOC

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I have a collection of abstracts that just point to the medical aspects of ME/CFS. I'm trying to expand it. As of now, it does not include dates or journal titles, or web links. I intend to begin a thread with it soon.
Thanks, gracenote, for your collection of abstracts! I'll be taking it to my PCP in a couple of days, hoping to give him a few clues about what we're dealing with. :rolleyes: He hasn't been much good about doing any research on his own or reading anything with substance that I give him. This list of abstracts should be just about the right amount -- I can highlight the points I most want him to try to absorb. At least he won't be able to say he didn't know. *grin*
 

taniaaust1

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I suggest to get hold of a copy of the "ME/CFS A clinical Case definition and Guidelines for Medical Practitioners. An Overview of the Canadian Consensus Document" booklet and take that with you to your doctors. In it there is one page with all the tests recommended for those with CFS/ME in it (of abnormal findings often found in our illness). http://sacfs.asn.au/download/consensus_overview_me_cfs.pdf (the tests are on page 18 of it).