Invisible Illness - Stories of Chronic Fatigue Syndrome

[Aurator]

I lnked to this in another thread earlier today: http://forums.phoenixrising.me/inde...is-biopsychosocial-talk-tomorrow.38603/page-2

The video itself can be seen here: https://m.youtube.com/watch?feature=youtu.be&v=9_HwOUiImvw

How the biopsychosocial proponents manage to retain any credibility at all in the face of evidence of physical suffering such as this is beyond me. The truth is they don't, but as long as their nonsense secures them a salary each month they're no doubt loath to stop spouting it, however much harm they know it's doing.

 

[ahimsa]

This is a very well done video. Sad story but I hope it raises awareness.

 

[Snookum96]

Wow. I'm sharing this with my family what a video.

 

[Sushi]

I am going to embed it here so members can watch it on-site.

 

[Asa]

...The truth is they don't, but as long as their nonsense secures them a salary each month they're no doubt loath to stop spouting it, however much harm they know it's doing.

Salaries for them and State insurance and judges.

 

[Snowdrop]

A heartbreaking video.

Shame, shame, shame on the BPS school that places their own needs for prestige and respect etc above the desperate needs of PWME who want so much to participate and engage fully in our lives and have no fear of or desire to avoid living.

So much time has been lost in finding treatments that would actually be of benefit thanks to this medical/political BS propaganda campaign. Putting CBT front and centre as a gold standard treatment is a very tragic joke. Especially as it has sucked up monies that could have been better used and has lead the general public/family and friends to think that we simple need reprogramming rather than proper medical attention.

And they wonder why we don't bow down and revere them.
Shame on BPS.
How do people get that stuffed.
(OK, so I do know that BPS isn't the focus of the thread but it's what always comes to mind every time I stop distracting myself long enough to face the misery we all experience with ME).

And just for clarity-- Shame on you BPS school of medicine for the harm you have done. Stay the hell away from us.
End of Rant.

 

[Bob]

As well as publishing the above video, Palo Alto online (which I assume is an online local newspaper) have published a series of articles in the same issue, as part of a feature on ME/CFS. See links below.

Living on empty
http://www.paloaltoonline.com/print/story/2015/07/10/living-on-empty

Chronic fatigue syndrome saps its victims, but new research may find the cause
http://www.paloaltoonline.com/news/...s-victims-but-new-research-may-find-the-cause

Unraveling the mystery of chronic fatigue syndrome
http://paloaltoonline.com/news/2015/07/10/unraveling-the-mystery-of-chronic-fatigue-syndrome

Whitney Dafoe: 'When I crash'
http://paloaltoonline.com/news/2015/07/10/whitney-dafoe-when-i-crash

 

[Bob]

Related forum threads:
http://forums.phoenixrising.me/inde...ty-new-article-featuring-whitney-dafoe.38661/
http://forums.phoenixrising.me/inde...-history-taking-root.37306/page-2#post-617293

 

[Bob]

The above Palo Alto online articles are also available, nicely laid out, in a PDF magazine.
See the front cover and page 20 onwards: http://www.paloaltoonline.com/morguepdf/2015/2015_07_10.paw.section1.pdf

 

[Snowdrop]

In the comments section of Living on Empty there is a pernicious comment from a Jake Rodden who talks only about his depression and how awful it is with a link to a website. I flagged it.
Don't know if it can be flagged multiple times for emphasis.

I also wonder how stories like this might make it into the British media. Especially given that the usual fare is the "I swam the English Channel and cured my ME" variety.

Perhaps a group of excellent articles can be sent by mail to targeted journalists showing them how relying on the SMC is bullocks. They my have utterly no awareness of how ME/cfs is beginning to be more properly perceived elsewhere in the world.

Edit: maybe the possibility of financial liability regarding misinformation about ME looming over them might be an incentive.

 

[Snowdrop]

Also, and sorry folks for the negativity of all my commenting but I found the insertion of the comment on the Jason psych study that found ME is more common among lower income people than affluent annoying.

In the current economic climate (which will not resolve with an easy fix) poor people are already the target and focus of a variety of unpleasant/unwelcome attitudes. There's blame, or a sense of deserving of the situation, a sense of not trying hard enough, of not being as clever, of 'these people' being a burden, having bad morals and on and on. The attitude is only becoming worse not improving. Why saddle PWME with this characterisation since we already suffer from a similar attitude that we are trying very hard to correct.

How does mentioning this help the situation in any way? Even if the data is good it has no context--did people become seriously illl then become poor?

Maybe it's a small point. But it just adds nothing to what is otherwise a really excellent article.

 

[Sushi]

Unraveling the mystery of chronic fatigue syndrome
http://paloaltoonline.com/news/2015/07/10/unraveling-the-mystery-of-chronic-fatigue-syndrome

Davis and his team plan to use technologies developed for the Human Genome Project to sequence the entire genome of chronic fatigue patients, including 1,600 mitochondrial genes, more than 20,000 other genes and control regions that regulate genes. They hope to identify proteins that are found in immune cells, blood and spinal fluid; search for infectious agents in blood, bone marrow, spinal fluid and saliva and changes to gastrointestinal tract flora; and find evidence of autoimmune responses. The research could reveal DNA sequences that are altered in chronic fatigue patients.

 

[ahimsa]

How does mentioning this [that ME/CFS diagnosis is more common among lower income] help the situation in any way?

I don't know for sure, but I think it may have been an attempt to counter the "yuppie flu" image. That is, there's a false belief that only people who are wealthy and can "afford" to get sick are the ones who have ME/CFS. If poor people never get sick with ME/CFS then some folks would think it does not exist.

Instead, it seems to be that patients with more resources (money, education, access) are more likely to get a diagnosis. And it is underdiagnosed among people without any of those resources.

This is just a guess! I could be totally wrong! (brain fog) Someone please correct me if this seems way off.

I agree that the reason for mentioning this fact in the article should have been made clear.

 

[Snowdrop]

@ahimsa You may be right about the poor people with ME image is an attempt to negate the yuppie flu image.

I was blowing off steam as I so often do and my question was mostly rhetorical. In that I don't think the comment is particularly useful even if you take into account your possibly quite accurate observation.

 

[Bob]

Yes, I thought it was probably an attempt to counteract the yuppie flu stereotypical image of patients. But probably not particularly helpful to say anything about the socio-economic backgrounds of patients, unless discussing the full context for academic purposes.

 

[user9876]

As well as publishing the above video, Palo Alto online (which I assume is an online local newspaper) have published a series of articles in the same issue, as part of a feature on ME/CFS. See links below.

Palo Alto is right next to Stanford so this could well be Ron Davis's local paper. It is also the center of silicon valley so huge potential for fund raising.

 

[Bob]

Palo Alto is right next to Stanford so this could well be Ron Davis's local paper. It is also the center of silicon valley so huge potential for fund raising.

We even learn geography on this forum! Here's a nice map of Palo Alto, for anyone interested. As @user9876 says, the map shows it situated right next to Stanford:
https://www.google.co.uk/maps/search/Palo+Alto/data=!4m2!2m1!4b1?hl=en-GB&nogmmr=1

 

[jess100]

Watching the film I noticed that Whitney DeFoe was a patient at OMI- and sadly he has not recovered and continues to get worse under some of the best care in the US. I was feeling hopeful about my new treatment plan from OMI but now I know it's not a given that I will get well.
Well written articles and movie, but they sucked the hope right out of me.