-
Welcome to Phoenix Rising!
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.
To become a member, simply click the Register button at the top right.
Article: Allies in the Fight: Gulf War Illness/ME/CFS Research Possibilities Emerge
- Thread starter Phoenix Rising Team
- Start date
Good news--thanks, Cort. But one point--the recent work done by Klimas and Gordon Broderick was able to show a clear difference in the cytokine arousal pattern between CFS and GWS--they seem quite closely related, and yet are clearly different. But it looks as if there is further work in the offing that should clarify the relationship. Best, Chris
Yes and both will be caught by the proposed new diagnostic criteria Complex Somatic Symptom Disorder CSSD ( which tellingly absorbs the old crieria of hyperchondriacs) under amendments to DSM 5 being developed by the American Psychiatric Association.
There Is a real danger in the future that persons who might have ME CFS will be diagnosed as having CSSD instead. PWCFS and GWS may also get this psychiatric diagnosis as a bolt on diagnosis..especially if they are perceived by their doctor has having high anxiety about one or more of their symptoms and make requests for say, an XMRV test (or any other test ) and bring in information in support of such and this subjectively assessed "excessive thought, feeling and or behavior" occurs over a consecutive period of more than 6 months.
For all those doctors in the USA who believe PWCFS or GWS are too difficult, non compliant with recognized treatment protocols or who simply see such patients as hyperchondriacs, then it will be very easy to assign the proposed new CSSD diagnosis to them and deny their requests for treatment other than anti depressants, GET and CBT.
The APA also are lobbying and calling for the WHO to harmonize these changes in their current review of ICD classifications.
If this all proceeds, it is not too hard to imagine CFS becoming lost in CSSD and recognised as a pure somatic illness and if that eventuates then grants of the nature you report here will dry up.
The deadline for public submissions on this proposal is 15 th June 2011.
Is the Board of PR making a submission Cort?
Irrespective, don't you think this development and a call for all PWME CFS to lobby CFS orgs and other stakeholders to make submisions quickly.... warrants an article on the front page? Perhaps you could interview Suzy Chapman?
After all this will directly effect all patients in the USA, with ripple on effects for other countries.
There Is a real danger in the future that persons who might have ME CFS will be diagnosed as having CSSD instead. PWCFS and GWS may also get this psychiatric diagnosis as a bolt on diagnosis..especially if they are perceived by their doctor has having high anxiety about one or more of their symptoms and make requests for say, an XMRV test (or any other test ) and bring in information in support of such and this subjectively assessed "excessive thought, feeling and or behavior" occurs over a consecutive period of more than 6 months.
For all those doctors in the USA who believe PWCFS or GWS are too difficult, non compliant with recognized treatment protocols or who simply see such patients as hyperchondriacs, then it will be very easy to assign the proposed new CSSD diagnosis to them and deny their requests for treatment other than anti depressants, GET and CBT.
The APA also are lobbying and calling for the WHO to harmonize these changes in their current review of ICD classifications.
If this all proceeds, it is not too hard to imagine CFS becoming lost in CSSD and recognised as a pure somatic illness and if that eventuates then grants of the nature you report here will dry up.
The deadline for public submissions on this proposal is 15 th June 2011.
Is the Board of PR making a submission Cort?
Irrespective, don't you think this development and a call for all PWME CFS to lobby CFS orgs and other stakeholders to make submisions quickly.... warrants an article on the front page? Perhaps you could interview Suzy Chapman?
After all this will directly effect all patients in the USA, with ripple on effects for other countries.
Having been in the Army, I'm quite surprised that GWI has gained the traction that it has. My limited trips to sick call, military hospitals usually encompassed a doctor's visual inspection to make sure no limbs were missing, no giant lacerations anywhere, no obvious swelling, no throwing up blood. Otherwise, it was --take some Motrin and report to duty, soldier. GWI/CF would have been a scammer's disease. At the base I where I stationed, complaining of chronic fatigue would have been "dereliction of duty." I just barely made it through four years. The fact that enough male and female vets with the same amorphous, mysterious illness got together and got the attention of the flat-earth Veterans Administration-- back in the mid-nineties-- is amazing.
Its so weird. I can't see a single comment...I guess the problem is that I wouldn't be able to see any replies to this comment.....
I couldn't see the article for a long time (kept telling me I wasn't authorised when I clicked on the link) and in the forum list I could see two versions of this article with identical titles, one getting views and one not... but I guess you can't see this...
Its certainly been an uphill battle. I imagine that what has happened is that all these people who remained sick after they got out finally caught the military's and the politicians eyes at least to some extent. They were people, after all, who were volunteers for military service - a tough gig! - who got sick and remained sick after they got out... That's a pretty tough group I would think.....
Cancer fatigue also has similar "research possibilities"
See also: Immunological Similarities between Cancer and Chronic Fatigue Syndrome: The Common Link to Fatigue?
http://www.cfids-cab.org/rc/Meeus-2.pdf
See also: Immunological Similarities between Cancer and Chronic Fatigue Syndrome: The Common Link to Fatigue?
http://www.cfids-cab.org/rc/Meeus-2.pdf
Thanks Snow Leopard - I didn't know that NK cytotoxicity, oxidative stress and NF-kb activation was found in that disorder as well! That's really something.....here we have a pro-inflammatory state associated with NK cell (and Dr. Klimas thinks) cytotoxic T-cell burnout....
One wonders what is the common theme below that? what do those things do...which shows up in the similar symptoms in both disorders? Reactivated herpesviruses? Immune cascade in the brain that never shuts off? We just need more research...
That provides more hope for collaboration and for everyone utlimately to help each other out. There definitely needs to be more interaction between these fields...I'm kind of surprised that there isn't. I suggested a cancer fatigue researcher in LA for the IACFS/ME conference and they thought it was a good idea - but they'd spent all their money. I think she was invited, though.
Baraniuk study
Cort
When will the Baraniuk study be out? I thought it was due April / May?
Lot of promise in these brain studies I think. The one from South Australia was good, kind of supporting Andrew Lloyd's theory that an initial insult (virus. toxins etc) leads to a brain issue. Its not to say the immune system isn't involved - some of these brain studies are pointing to roles for microglia, astrocytes....
Baraniuk touched on cannabinoid agonists as potential treatment for CFS in his NIH presentation, would be keen to know more about that!!!!!
If I recall he said he would put his money on these being a good treatment....
Cort
When will the Baraniuk study be out? I thought it was due April / May?
Lot of promise in these brain studies I think. The one from South Australia was good, kind of supporting Andrew Lloyd's theory that an initial insult (virus. toxins etc) leads to a brain issue. Its not to say the immune system isn't involved - some of these brain studies are pointing to roles for microglia, astrocytes....
Baraniuk touched on cannabinoid agonists as potential treatment for CFS in his NIH presentation, would be keen to know more about that!!!!!
If I recall he said he would put his money on these being a good treatment....
I thought it would be out earlier as well but he said everything was on track and that we should expect a stream of papers to come from that.....
Exactly - its the immune system in the brain - the microglia as well as the astrocytes - that several researchers are interested in. I got a chance to talk to Dr. Peterson and he thinks it all in the brain...whether its pathogens or an immune cascade (sickness 'behavior')......
Gotta check out those cannabannoids.....still working on the Neuro presentations from the Workshop.
Yeah I am absolutely convinced the problem lies in the brain.
My money is on an initial insult (viral, bacterial, toxin etc) which triggers permanent damage somewhere in the brain, in genetically susceptible individuals (ie. US!)
After more than 20 years I've given up faith in one viral cause (eg. XMRV). To me anyway, the brain hypothesis is the most convincing. To think all those years ago Jay Goldstein was touching on these issues, around the Limbic area etc.
Hopefully one or more of these guys will now nail the brain issues and we get some serious research into investigating treatments that remedy the brain dysfunction
My money is on an initial insult (viral, bacterial, toxin etc) which triggers permanent damage somewhere in the brain, in genetically susceptible individuals (ie. US!)
After more than 20 years I've given up faith in one viral cause (eg. XMRV). To me anyway, the brain hypothesis is the most convincing. To think all those years ago Jay Goldstein was touching on these issues, around the Limbic area etc.
Hopefully one or more of these guys will now nail the brain issues and we get some serious research into investigating treatments that remedy the brain dysfunction
I found this recent study fascinating, stating that astrocyte dysfunction disturbs circadian rhythms and sleep...sound familiar anyone??
http://www.topnews.in/healthcare/co...n-cells-regulate-circadian-rhythms-identified
http://www.topnews.in/healthcare/co...n-cells-regulate-circadian-rhythms-identified
Cheney too early on talked about the limbic region. Goldstein was probably way ahead of his time and basically too unusual - too innovative to gain followers in the medical profession. It'll be interesting to see how his ideas play out.
My thoughts exactly. The parallels between mild TBI (only recently in the news because of war vets and athletic injuries) and a great number of the cases of ME/CFS have become obvious. You might want to see how many TBI symptoms correlate to your condition:
http://en.wikipedia.org/wiki/Traumatic_brain_injury
ME/CFS is in great part a self-inflicted brain injury. My hopes are with Dr. Klimas research into area of research.
http://en.wikipedia.org/wiki/Traumatic_brain_injury
ME/CFS is in great part a self-inflicted brain injury. My hopes are with Dr. Klimas research into area of research.
have to say, I know Klimas means well and has been a great CFS supporter, but I have been underwhelmed by the (lack of) delivery in her research. She seems to have been talking up immune dysfunction for years and years without really nailing anything truly compelling
hope I am proven wrong and that she really delivers! but I see greater potential coming from Baraniuk, and all the Australian and Japanese researchers focussing on the brain in CFS
MishMAsh - thanks, that TBI info provides further food for thought on the brain's role in CFS
hope I am proven wrong and that she really delivers! but I see greater potential coming from Baraniuk, and all the Australian and Japanese researchers focussing on the brain in CFS
MishMAsh - thanks, that TBI info provides further food for thought on the brain's role in CFS
"VCS Helps Win $10 Million for Gulf War Illness Research/"House Passes Defense Appropriations Bill, CDMRPs Retained"
It has been my personal experience that little if any personal benefit has had any positive impact on my life in dealing with GWI.
One year of my life feels like I've aged 5 years with regards to having less stamina and energy.
The VA in Florida where I receive my health care knows little if anything about GWI. They have lots of posters on their walls for show but that is about all.
That said the VA is not pushing down what they have learned to hospitals & clinics to help veterans whom have GWI.
It has been my personal experience that little if any personal benefit has had any positive impact on my life in dealing with GWI.
One year of my life feels like I've aged 5 years with regards to having less stamina and energy.
The VA in Florida where I receive my health care knows little if anything about GWI. They have lots of posters on their walls for show but that is about all.
That said the VA is not pushing down what they have learned to hospitals & clinics to help veterans whom have GWI.
I saw this small article in the Mirror yesterday, though I don't think this explains it all. I seem to remember a connection with low testosterone in male CFS patients, too.
http://www.mirror.co.uk/news/top-st...ows-gulf-war-syndrome-exists-115875-23260035/
Glynis
A GROUP of Gulf War veterans has been diagnosed with an extremely rare illness that would normally affect just one man in the entire European population.
The vets have been told they are suffering from a systemic disease that stops them producing testosterone and affects their glands, brains, hearts and other organs. It also leads to early-onset of osteoporosis.
Prof Stephen Atkin studied 11 vets over two years in Hull. His findings reveal eight are suffering from lymphocytic hypophysitis which usually affects just one in 500million men. His findings also link the illness to the multiple vaccinations soldiers were given against chemical and biological agents in 1990.
Former Army medic Shaun Rusling, 52 who now has to inject testosterone into his stomach twice a day said: This is a dramatic finding which gives physical proof that Gulf War Syndrome exists.
But the MoD said: Extensive research has indicated there is no one illness specific to these veterans.
http://www.mirror.co.uk/news/top-st...ows-gulf-war-syndrome-exists-115875-23260035/
Glynis
A GROUP of Gulf War veterans has been diagnosed with an extremely rare illness that would normally affect just one man in the entire European population.
The vets have been told they are suffering from a systemic disease that stops them producing testosterone and affects their glands, brains, hearts and other organs. It also leads to early-onset of osteoporosis.
Prof Stephen Atkin studied 11 vets over two years in Hull. His findings reveal eight are suffering from lymphocytic hypophysitis which usually affects just one in 500million men. His findings also link the illness to the multiple vaccinations soldiers were given against chemical and biological agents in 1990.
Former Army medic Shaun Rusling, 52 who now has to inject testosterone into his stomach twice a day said: This is a dramatic finding which gives physical proof that Gulf War Syndrome exists.
But the MoD said: Extensive research has indicated there is no one illness specific to these veterans.