Gemini
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Timaca,
Excellent website, outstanding "Mission Statement" for Dr. Montoya's vital research.
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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Stanford Chronic Fatigue Initiative Website is Online!
- Thread starter Timaca
- Start date
Timaca,
Excellent website, outstanding "Mission Statement" for Dr. Montoya's vital research.
- Messages
- 57
- Location
- Seattle area
I really like the broad approach they are taking. I'm especially impressed that they've included Dr. Stratton for Cpn. For a little different slant from the usual "viral onset ME/CFS", here is an article written by a patient advocate on the work he was doing at Vanderbilt. And all the resistance he had when he was reseraching connections of Cpn to ME/CFS.
http://www.prohealth.com/library/showarticle.cfm?id=7938&t=CFIDS_FM
No viral infection required.
I think it's safe to assume that they were looking into various infections and the patient group that they used was not the "fatigue is the primary symptom" group.
Many people have two or more of the infections mentioned in the web site. It's going to take a multi-faceted approach to make progress with this.
There is the question of whether or not the damage done by having a particular long term infection can even be reversed. And with a "soup" of infections, there's is the interaction they have. And the important question of how many conditions do you have to clear up before a particular patient starts to see an improvement in overall functioning.
I think many people will not see much improvement until progress is made in several of these areas (just my opinion).
And with all of this, I'm reminded of what one of my profs used to say about correlation vs cause-effect relationship. "There is a very high, positive correlation between tall boys and long pants. But that doesn't mean the long pants are causing the tall boys, or that you can get taller boys by having them wear longer pants".
http://www.prohealth.com/library/showarticle.cfm?id=7938&t=CFIDS_FM
No viral infection required.
I think it's safe to assume that they were looking into various infections and the patient group that they used was not the "fatigue is the primary symptom" group.
Many people have two or more of the infections mentioned in the web site. It's going to take a multi-faceted approach to make progress with this.
There is the question of whether or not the damage done by having a particular long term infection can even be reversed. And with a "soup" of infections, there's is the interaction they have. And the important question of how many conditions do you have to clear up before a particular patient starts to see an improvement in overall functioning.
I think many people will not see much improvement until progress is made in several of these areas (just my opinion).
And with all of this, I'm reminded of what one of my profs used to say about correlation vs cause-effect relationship. "There is a very high, positive correlation between tall boys and long pants. But that doesn't mean the long pants are causing the tall boys, or that you can get taller boys by having them wear longer pants".
Timaca
Senior Member
- Messages
- 792
eric_s~ Thanks for your feedback. Based on what you googled, just for fun, I just googled "Stanford chronic fatigue" and the Stanford website came up on the first page, second one on the page. I googled "Stanford Chlamydia pneumonia" and the website came up first page, top of the page. It came up with several options on the first page when I googled "Stanford enterovirus".
It may take Google awhile to find "Stanford CFS" since the CFS words are not as prominent on the website as Cpn or enterovirus and I don't think "ME" is on the website at all. But your idea is a good one, and the web team should be able to make those words search engine friendly. I'll pass your suggestion along.
Thanks, Timaca
It may take Google awhile to find "Stanford CFS" since the CFS words are not as prominent on the website as Cpn or enterovirus and I don't think "ME" is on the website at all. But your idea is a good one, and the web team should be able to make those words search engine friendly. I'll pass your suggestion along.
Thanks, Timaca
Timaca
Senior Member
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- 792
Thanks, Gemini.....appreciate the positive feedback.
Paclabman~ I'm one of those people with a "soup" of infections. By treating some, I have felt better and antibody titers have dropped. I certainly have a better life now than at the worst of my illness, although I am not (yet) well.
I love what you said about the tall boys and the pants.
Thanks for the chuckle.
Best, Timaca
Paclabman~ I'm one of those people with a "soup" of infections. By treating some, I have felt better and antibody titers have dropped. I certainly have a better life now than at the worst of my illness, although I am not (yet) well.
I love what you said about the tall boys and the pants.
Thanks for the chuckle.Best, Timaca
justinreilly
Senior Member
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- NYC (& RI)
In addition to not linking to CDC, pls don't link to CFIDS Assoc of America they both are unreliable sources which patients strongly oppose.
http://forums.aboutmecfs.org/showthread.php?10169-Caa-poll&p=160617#post160617
I strongly suggest a link to the CCC document. The vast majority of experts including researchers, clinicians and patients agree it is definitive and comprehensive.
http://www.cfids-cab.org/MESA/ccpccd.pdf
http://forums.aboutmecfs.org/showthread.php?10169-Caa-poll&p=160617#post160617
I strongly suggest a link to the CCC document. The vast majority of experts including researchers, clinicians and patients agree it is definitive and comprehensive.
http://www.cfids-cab.org/MESA/ccpccd.pdf
SpecialK82
Ohio, USA
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- Ohio, USA
Timaca - thanks for all your hard work being our liason! Love the site and all the good work ahead.
Do need to just echo the others that the name is critical to how we are viewed by society and that society even includes our own physcians. They need to learn to call it by the correct (although crappy) name. I would love to see ME/CFS get worked in somewhere too. Thanks again
Do need to just echo the others that the name is critical to how we are viewed by society and that society even includes our own physcians. They need to learn to call it by the correct (although crappy) name. I would love to see ME/CFS get worked in somewhere too. Thanks again
Hi Timaca,
I have a suggestion. I realise you are probably after suggestions about the website but I leave my post up as I hope it may have some effect.
I have quickly read through the Stanford homepage site and noticed that although there is a focus on PATHOGENS I could not see a reference to family studies, in the sense of looking at associated disease patterns, epidemiology, transmission and that sort of thing.
I think there is AS MUCH TO BE LEARNT about this disease from looking at patterns of spread and illness in families as there is in focusing down on possible causal microorganisms.
I have followed all the recent debate on whether XMRV can be found by PCR and the latest negative research findings.
WHAT IMPRESSES ME MOST about the new impetus to research started by the WPI is not necessarily the link to XMRV which may or may not be proven, but the links they found with autistic spectrum disorders and other neuroimmune disease in families where CFS/ME exists.
This is because this observation forms a coherent picture out of a disturbing and unusual pattern in my own family.
On my father and mothers side there is no illness. I have loads of disgustingly healthy aged relatives in their eighties.
But all my mothers children, all three of us are ill. My sister and myself both developed severe CFS/ME in our early twenties, in the 1980's. We are still unwell. Our brother has Asperger's syndrome, and now, at fifty has Parkinsons disease. My sister in addition to her CFS has Hashimotos thyroiditis. We were all very healthy as children. Why this strange concentration of illness in one family? We were born in the 1950's and became ill in the 80's. There is no illness in the wider family, nor as far as I can judge, further back among past relatives.
The link the WPI makes between neuroimmune disorders and CFS deserves study because there must be an underlying cause to this pattern. If it is not XMRV it must be something else, and you need to look for the common factor and look at the larger picture and not get lost in a maze by looking only at individual microorganisms. Try to do studies which look for connections between associated disease patterns in families and also look for transmission patterns.
Keep your vision broad, that could be the clue.
You also need to study the history of this illness. I worked for one of the ME patient organisations for fifteen years and I noticed that the disease was affecting children increasingly, wheras in my generation it affected adults. THIS IS SIGNIFICANT. I was very concerned by this but I have noticed that younger researchers now take it for granted that children get CFS/ME. This assumption worries me. I am sure this is a new phenomenon. I grew up in the sixties and you never heard of children with CFS/ME then.
Because the opportunity for recognising CFS/ME as a new disease was lost (when it was new) we must not assume that the patterns we see now have always been so. We need to recognise the value of an investigation which includes an historical perspective.
I realise I have probably written off topic. Is there any way of getting this feedback to the researchers?
I have a suggestion. I realise you are probably after suggestions about the website but I leave my post up as I hope it may have some effect.
I have quickly read through the Stanford homepage site and noticed that although there is a focus on PATHOGENS I could not see a reference to family studies, in the sense of looking at associated disease patterns, epidemiology, transmission and that sort of thing.
I think there is AS MUCH TO BE LEARNT about this disease from looking at patterns of spread and illness in families as there is in focusing down on possible causal microorganisms.
I have followed all the recent debate on whether XMRV can be found by PCR and the latest negative research findings.
WHAT IMPRESSES ME MOST about the new impetus to research started by the WPI is not necessarily the link to XMRV which may or may not be proven, but the links they found with autistic spectrum disorders and other neuroimmune disease in families where CFS/ME exists.
This is because this observation forms a coherent picture out of a disturbing and unusual pattern in my own family.
On my father and mothers side there is no illness. I have loads of disgustingly healthy aged relatives in their eighties.
But all my mothers children, all three of us are ill. My sister and myself both developed severe CFS/ME in our early twenties, in the 1980's. We are still unwell. Our brother has Asperger's syndrome, and now, at fifty has Parkinsons disease. My sister in addition to her CFS has Hashimotos thyroiditis. We were all very healthy as children. Why this strange concentration of illness in one family? We were born in the 1950's and became ill in the 80's. There is no illness in the wider family, nor as far as I can judge, further back among past relatives.
The link the WPI makes between neuroimmune disorders and CFS deserves study because there must be an underlying cause to this pattern. If it is not XMRV it must be something else, and you need to look for the common factor and look at the larger picture and not get lost in a maze by looking only at individual microorganisms. Try to do studies which look for connections between associated disease patterns in families and also look for transmission patterns.
Keep your vision broad, that could be the clue.
You also need to study the history of this illness. I worked for one of the ME patient organisations for fifteen years and I noticed that the disease was affecting children increasingly, wheras in my generation it affected adults. THIS IS SIGNIFICANT. I was very concerned by this but I have noticed that younger researchers now take it for granted that children get CFS/ME. This assumption worries me. I am sure this is a new phenomenon. I grew up in the sixties and you never heard of children with CFS/ME then.
Because the opportunity for recognising CFS/ME as a new disease was lost (when it was new) we must not assume that the patterns we see now have always been so. We need to recognise the value of an investigation which includes an historical perspective.
I realise I have probably written off topic. Is there any way of getting this feedback to the researchers?
Timaca
Senior Member
- Messages
- 792
currer (and all who posted)~ I am summarizing everyone's comments and passing them along. The concerns about the name have already been passed along. I hope to summarize the rest of the comments from this thread and Cort's posting on the home page today or tomorrow and pass those along as well. Thanks for your (and everyone elses) input.
Best, Timaca
Best, Timaca
*GG*
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Timaca
Senior Member
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I summarized and shared your ideas with the Stanford team. Thanks for your feedback.
Best, Timaca
Best, Timaca
justinreilly
Senior Member
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I wasn't trying to dis you GG; sorry if i did; i would take back the 'obviously' looking at it now. it isn't obvious.
justinreilly
Senior Member
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- NYC (& RI)
Thanks, Timaca.
5150
Senior Member
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- 360
hi justin,
yeah, it's been a 30 years ordeal for me. first 10years, a big change from healthy but i could function pretty well. second 10years, progressively worse with a large cutback in physical ability, and third 10years the mental and neurological symptoms kicked in and are slamming me full-time. currently lymph glands of chest and neck are worrisome...need to get on a cancer check up course; heart has weakened dramatically; circulation issues in extremities/cold legs & waist progressed; digestion won't get beyond barely functional; and inflammation is rampant; kidneys function about half.
believe me, i am totally motivated to participate in appropriate studies (I am in 3), so that info learned can be shared with all others hopefully. I am doing as much informative protesting as my limits allow, and i am definitely in the camp of "helping all patients", particularly long-time sufferers. i have family members affected, friends, and friends-of-friends.
what is going on now is reprehensible. hopefully my abilities stays tuned enough to for me to stay involved. i do what i can. with interest, i see ecoclimber perhaps in a position to help with some funding through his contacts. i hope he stays involved, as the value far outweighs the downside of the verbal abuse he had put on him. If Bill & Melinda Gates Foundation got involved , it would be huge for us both financially and in forwarding legitimacy. I contacted Steve Jobs 3 times but he didn't respond; i guess due to his own health struggles.
thanks for your own work, too.
5150
*GG*
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Apology accepted, not the first time I felt dissed by you. FYI