November 21, 2018, 05:31:35 AM *
Welcome, Guest. Please login or register.
Did you miss your activation email?

Login with username, password and session length
Pages: [1] 2   Go Down
Print
Author Topic: cfs research talk  (Read 7249 times)
0 Members and 1 Guest are viewing this topic.
mothernurture
Lifetime Member
*****
Offline Offline

Gender: Female
Posts: 1417


I am recovering from M.E


« on: June 13, 2010, 08:00:41 PM »

 Hi,i stumbled across this today on the net. its an hour long talk by a proffessor from harvard medical school. it was really good for me to watch this today as i have been in serious denial about my illness, often believing that it doesnt' exist or that i really am a hypochondriac.

in this talk he brings together basic information on all the up to date research and stretching back for 20 years.

http://www.masscfids.org/videofiles/Komaroff/Komaroff.html
 
Logged
Slow_Leopard
Code Monkey
Lifetime Member
*
Offline Offline

Gender: Male
Posts: 2451


Joint Hypermobility Syndrome


« Reply #1 on: June 13, 2010, 09:27:59 PM »

That was a very interesting watch.  I was glad to see it done my someone with credentials and that whilst there was no imminent cure or diagnosis test at least there seem to be enough leads to warrant more research.  The initial relative health graph was I felt a good indicator of how many feel about the confusion of the disease with depression, with CFS patients being worse in pretty much every category except mood.
Logged
bawolf
Guest
« Reply #2 on: June 14, 2010, 12:52:06 AM »

Wow!
 
I really appreciate your putting that up on the forum.  I found the graphs showing the proteins found in the body of CFS vs. non-CFS after exercise to be stunning!

This was both a comfort and yet it made me a little sad.  I'm really sick!  There is no denying it and getting away with it for very long anymore.

 I've been fighting for myself with doctors, coworkers, friends and family for so many years - it's hard to believe that - if he's right - in a couple more years, there will be much more interest in researching and finding treatments!

Thanks.

Logged
mothernurture
Lifetime Member
*****
Offline Offline

Gender: Female
Posts: 1417


I am recovering from M.E


« Reply #3 on: June 14, 2010, 10:02:45 AM »

 Yes, i totally agree with both your comments. it also made me sad as it means i have to face up to how ill i really am. but as you say bawolf was comforting as well.

i agree that with people like this on board at looks like more people will understand the seriosness of this illness. most people dont understand at all what it is about and just seem to get a glazed look when i tell them. or think it means that i get a bit more tired than others(how wrong could you be)

Yes he isnt saying they know what causes it let alone being close to a cure, but it does offer incontrivertable evidence that CFS/ME is a biological disorder, with biological markers that can be picked up in the body. it makes me feel like inviting the british NHS to watch this and then tell me that all i need to do is get over my emotional problems. can you imagine them saying that to someone with heart disease or MS?

now i just have to convince my family to watch it.
Logged
agapanthus
Staff
Lifetime Member
*
Offline Offline

Gender: Female
Posts: 8318


I'm a CFS sufferer...


« Reply #4 on: June 14, 2010, 02:02:56 PM »

As I said on the LP thread mn .. thanks so much for posting this. It is great to see the medical evidence presented in this calm rational manner. You would wish every GP in the country to see and believe!

There are some people who believe that one of the problems is that when the label for ME/CFS changed from ME to Chronic Fatigue Syndrome that it let many people into being diagnosed with a different illness. Without a diagnostic test none of us will know for sure, but it's possible. Also some people believe that those who then go on to function well (eg via LP, Gupta or whatever) that they never had ME in the first place. I just don't know, but I do know that there are different criteria for describing the illness and this makes a difference.

Anyway ... re the XMRV research. This is being done by the Whittemore/Peterson Institute with regard to ME/CFS and due to the disbelief in the UK studies they are doing their own study of around 200 people with ME/CFS themselves just in this country. I volunteered for this study a while back and they started a few months ago, but got delayed by the ash cloud. Now they are coming back and I should get my blood taken soon.
Logged

jackey
Guest
« Reply #5 on: June 14, 2010, 07:21:27 PM »


That was so interesting  and whats more I was able to understand it  shocked

Im going to watch it again later with my husband 

Jackey
Logged
Dozy-T
Guest
« Reply #6 on: June 14, 2010, 09:06:22 PM »

What a great find MN.  I will refer my family and friends to this link in the hope that they can gain a much better understanding of this condition than I could ever afford them with my feeble attempts at explanation.
 bravo_2 c017
Logged
h3rjp
Guest
« Reply #7 on: June 15, 2010, 08:47:54 AM »

How did you find this?  I must say thank you very much indeed for posting this.  s_cool

This is probably the most concise and important thing I've ever seen related to the medical understanding of CFS/ME
Logged
mothernurture
Lifetime Member
*****
Offline Offline

Gender: Female
Posts: 1417


I am recovering from M.E


« Reply #8 on: June 15, 2010, 01:47:03 PM »

 i have to admit to finding this through another forum that i joined called foggy friends. i dont actually use the other forum that often as i dont feel it has the personal touch of this one. i am so glad that this has helped so many of you and i am hoping that some of our partners and famillies will watch it. my hubby has promised to soon.

                              I love talking to you guys! it brightens up my day  Kiss
Logged
ian2008
Senior Member
****
Offline Offline

Gender: Male
Posts: 575



« Reply #9 on: June 15, 2010, 06:05:48 PM »

Very interesting and thank you.

Ian
Logged
iddm
Lifetime Member
*****
Offline Offline

Gender: Female
Posts: 1398

I'm a CFS and FM sufferer...


« Reply #10 on: June 15, 2010, 11:52:28 PM »

Really brilliant link.
How can anyone say its not real when so much has been proved!!!!!
Thanks for posting it.
I am sending it on to people

IDDM
Logged

I maybe a sufferer but I'm no longer a victim to it.
roger
Staff
Lifetime Member
*
Offline Offline

Gender: Male
Posts: 10327


After 12 years of trying, I'm now A OK


« Reply #11 on: June 16, 2010, 07:02:09 AM »

A great and fascinating link indeed - thanks MN  Wink

And IDDM, in case you didn't catch my previous apology for calling you 'He' on another thread - I'm really sorry  Huh?
« Last Edit: June 16, 2010, 07:13:51 AM by roger » Logged

'Nothing is, but thinking makes it so'
sleepyhead
Lifetime Member
*****
Offline Offline

Gender: Female
Posts: 2984


I'm a CFS sufferer...


« Reply #12 on: June 16, 2010, 07:04:32 AM »

thanks for that! will have a look when i get home from work (YUK!) x
Logged

Slainte Mhath
ian2008
Senior Member
****
Offline Offline

Gender: Male
Posts: 575



« Reply #13 on: June 16, 2010, 11:50:45 AM »

Okay. I have had time to think about that video and my illness.

I'm ill. Fact!

What he said about viruses got me thinking about me getting glandular fever when I was thirty(now 54). When I was having loads of blood tests just over two years ago, they could tell that I had had GF at some point in the past. Is the virus still there but being suppressed by immune system until some other virus came along and messed things up big time.

My wife was a little shocked when he was describing the symptoms. she said, "that is exaclty what you get".

I think I will point my doctor in the direction of this video. I think there are a lot of people who REALLY NEED to watch it.

Regards

Ian
« Last Edit: July 21, 2010, 07:18:28 AM by ian2008 » Logged
roger
Staff
Lifetime Member
*
Offline Offline

Gender: Male
Posts: 10327


After 12 years of trying, I'm now A OK


« Reply #14 on: June 16, 2010, 12:29:04 PM »

Agreed, Ian - the more doctor's who see it, the more likely they'll get interested enough to take it seriously. Or is that just wishful thinking?
Logged

'Nothing is, but thinking makes it so'
mothernurture
Lifetime Member
*****
Offline Offline

Gender: Female
Posts: 1417


I am recovering from M.E


« Reply #15 on: July 02, 2010, 12:46:58 PM »

I still havent managed to get my hubby to watch this. its very frustrating trying to get him to read stuff, like my test results, info on my supplement regime etc.

to be honest i'm typing this to bump it back up to first page, so that any newbies will see it. (sorry if thats naughty)
Logged
roger
Staff
Lifetime Member
*
Offline Offline

Gender: Male
Posts: 10327


After 12 years of trying, I'm now A OK


« Reply #16 on: July 02, 2010, 01:38:28 PM »

Tell you what, MN - I think partners tend to take a head buried in the sand approach, and who can blame them. They're as baffled as we are and that frightens them, though they won't admit it, and fear induces denial mode. It's not their fault.


LOL LOL....what a cunning plan! I've got loads of disappeared and previously ignored posts. I think I'll give that a go, but I won't be as honest as you. I'll think of a good excuse.  Thanks for the tip  Smiley
Logged

'Nothing is, but thinking makes it so'
Philpy1999
Guest
« Reply #17 on: September 08, 2010, 07:23:45 AM »

to be honest i'm typing this to bump it back up to first page, so that any newbies will see it. (sorry if thats naughty)

Allow me to help Wink x
Logged
Olive Oyl 5
Full Member
***
Offline Offline

Posts: 120


« Reply #18 on: February 26, 2011, 05:39:31 PM »

Thank you for posting this. It was excellent. I found it when you recommended it to Andymanne. Hope this post will put it back on the first page. Smiley

OO
Logged
mothernurture
Lifetime Member
*****
Offline Offline

Gender: Female
Posts: 1417


I am recovering from M.E


« Reply #19 on: February 26, 2011, 05:44:33 PM »

yes it really is good isnt it? thanks for bumping it back up. i hope more people watch it.
Logged
bobo2009
Junior Member
**
Offline Offline

Gender: Female
Posts: 66


« Reply #20 on: February 26, 2011, 07:16:31 PM »

Thanks for bumping this  thumbsup

After 17years of this illness its hard to believe that most doctors and the dwp in the UK are really no further forward in accepting this illness as real. Yeah like i really want to go through all this hassle all the time and for the majority of the time just exist, not actually live my life
Logged
PawPrints86
Lifetime Member
*****
Offline Offline

Gender: Female
Posts: 2776


I'm a CFS sufferer... 9 years and counting


« Reply #21 on: February 26, 2011, 08:01:14 PM »

im only about halfway through, but thank you so much for this!! ITs very informative. I may consider sending it to close friends, so they know im not crazy/lazy/making it up
Logged

I have an extreme amount of determination and focu....  hey look!! a BED!
cigana
Guest
« Reply #22 on: March 04, 2011, 11:35:09 PM »

Hi,

In a similar vein you might also like Professor Malcolm Hooper's talk (1st of 10 parts):

Engaging with ME

http://www.youtube.com/watch?v=7UpLuXFXJCc
Logged
mothernurture
Lifetime Member
*****
Offline Offline

Gender: Female
Posts: 1417


I am recovering from M.E


« Reply #23 on: November 29, 2011, 04:36:57 PM »

Thanks for sticking this on the board!

 c017 c017  MN
Logged
carrie
Staff
Lifetime Member
*
Offline Offline

Gender: Female
Posts: 3620


CFS and Fibro sufferer


« Reply #24 on: November 29, 2011, 07:19:07 PM »

Your welcome MN I havent watched it all yet, my brain cannot concentrate for that length of time so aim to watch it in sections I have watched the first one so far.
Logged
Pages: [1] 2   Go Up
Print
Jump to:  

Black Rain by Crip

© Chronic Fatigue Syndrome

Powered by SMF 1.1.21 | SMF © 2015, Simple Machines
XHTML | CSS