Patient Advocates and Health Coaches

[Rufous McKinney]

My daughter feels I would benefit from obtaining a Patient Advocate or Health Coach.

Has anyone ever worked with such folks?

Can we share experiences as to whether that might be helpful?

Would you dare contact somebody who claims they "cured" their ME CFS?

What are Pros and Cons of- finding help, possibly just Zoom help (I think)?

How would we find this type of help?

 

[ruben]

As someone who's been ill for decades and also tried the lightning process when that first appeared, no I wouldn't bother with that route. Surely science will soon uncover just where our problem actually is.

 

[Blue Jay]

I don't have any experience of either. Maybe a Patient Advocate could prove useful if finding it difficult to speak up for oneself (through feeling too ill for instance).

What would a Health Coach do? It sounds like somebody who trains one out of being ill in which case it would be a total waste of time and money. I might have the wrong idea so I'll try to keep an open mind.

 

[BrightCandle]

A lawyer might sharpen some minds if you can afford that route. Bringing one or having them on the phone through the appointment listening in could be immensely powerful. Whether it gets you anywhere I have no idea but lawyers are the official advocate service to ensure people are treated fairly. I think for ME/CFS patients its the only remaining tool to change things.

 

[Nord Wolf]

My daughter feels I would benefit from obtaining a Patient Advocate or Health Coach.

Has anyone ever worked with such folks?

I know @Emmarose47 mentioned she had an advocate through MEAction at one point.
Mine is both my PCP (who is my strongest, most driven, and most active health advocate), and a person from a local hospital Patient Advocacy department. But the one from the hospital can only work within the hospitals regional health network.

Would you dare contact somebody who claims they "cured" their ME CFS?

I would have to know the person and their history...

What are Pros and Cons of- finding help, possibly just Zoom help (I think)?

I think health advocates can be a huge asset for many of us. Finding them could be tricky depending. I think if you have a specific health issue, like ME for example, you can solicit organizations like MEAction that target not only the condition, but people affected and the entire medical community. There are many organizations like this that were founded on numerous specific health issues.