Information for doctor

[lllamamom]

Had to see my primary doctor today, for something unrelated to ME. Told her briefly about how I had put together all the divergent symptoms, a friend in Scotland pointed me to MEassociation.uk for information, and the light bulb came on.

Amazingly, she has asked for more information! So, if you were giving your doctor solid, good information, what would you give her? I have the clinical research report from MEassociation.uk, and will give her links to a couple other places I've found. This doctor might actually be a positive!

 

[Rebeccare]

Wow! I'm so glad you had a good experience with your doctor!

This might be helpful: http://iacfsme.org/portals/0/pdf/Primer_Post_2014_conference.pdf

 

[Shoshana]

On the Home page of this site, we are on, click on menu items

About CFS/ME

and,

Treatments.

Or send her to do that.

SO glad she shows a possible willingness to be open to new information and to educate herself about an illness.
Encouraged for you, @lllamamom

 

[arboretum]

The clinician's guide on the National Academy of Medicine (formerly the Institute of Medicine) website (http://www.nationalacademies.org/hmd/Reports/2015/ME-CFS.aspx) might be good.

 

[Diwi9]

Amazing opportunity! I'd share Montoya's cytokine research:

http://www.pnas.org/content/114/34/E7150.full

and

https://www.nature.com/articles/s41598-018-20941-w

ETA: along with the IOM (National Academies of Medicine) Report as linked in a prior post.

 

[lllamamom]

Thank you all! For another source, there's meassociation.org.uk, which is where I first found some answers. They have an ME Support side, similar to here. For a tongue in cheek bit, there's ScrewME on FB, which has frequent current articles, and responds to questions too.

I find it fascinating that support in the US is so thin on the ground. Indeed, Mayo Clinic still says graded exercise is appropriate, when that's been disproven. Yet in the UK, I get notices almost weekly of showings and discussion of UnRest, and there are physical groups meeting. Those of us in the US need to beat on our doctors more, I think, with current, factual, and supported information.

Thoughts?

 

[Diwi9]

Mayo Clinic has not been progressive with this ME/CFS, even though they seem to be pretty up-to-speed on POTS. The bigger changes in the US have involved dropping GET and CBT by the NIH and CDC. The IOM report had a big impact on them.

We seem to have a mixed bag when it comes to GP's in the US. I've been fortunate to have a compassionate and understanding provider, she has never been dismissive and has been supportive of treatments suggested by my ME/CFS specialist. It seems like younger doctors, in general, are more open to learning about ME/CFS. I have one friend whose sister is a family practice doctor and I regularly shuffle research her way, as her sister is interested (pretty cool!). What I've heard is that many family doctors are frustrated because they see this disease often in their practice, but feel they have very little understanding and tools. The gap exists in medical school training, at least GP's in the UK are taught about ME/CFS...although curriculum reform is imperative!

 

[Shoshana]

Yes, I had found in the past, that the Mayo clinic website info,
is shockingly behind and incorrect, on some medical issues. It SHOULD be a reputable and respectable source of info, like most people assume it is!