The Marshall Protocol Study Site Home

Search
   
Members

Calendar

Help

Home
Search by username
   Not logged in - Login | Register 
The Marshall Protocol Study Site > PROF. MARSHALL'S PERSPECTIVE > Prof. Marshall's Perspective > IOM renames CFS/ME to SEID, whether you like it or not


IOM renames CFS/ME to SEID, whether you like it or not
 Moderated by: Prof Trevor Marshall Page:    1  2  Next Page Last Page  
 

New Topic

Reply

Print
AuthorPost
Prof Trevor Marshall
Foundation Staff


Joined: Fri Jul 9th, 2004
Location: Thousand Oaks, California USA
Posts: 15742
Status:  Offline
 Posted: Tue Feb 10th, 2015 07:47

Quote

Reply
Summary of IOM's thoughts are at:
http://www.iom.edu/~/media/Files/Report%20Files/2015/MECFS/MECFS_ReportBrief.pdf

More info at:
http://www.iom.edu/Reports/2015/ME-CFS.aspx

Scientist and Physicians work in mysterious ways. I wonder if Europe will go along with this rebranding (..unlikely IMO..)

..Trevor..

ps: My summary is that the finding could have been a lot, lot, worse. Except  for the ridiculous name change, the overall report is not too bad.

David_in_UK
inactive member


Joined: Sat Jun 30th, 2012
Location: United Kingdom
Posts: 598
Status:  Offline
 Posted: Tue Feb 10th, 2015 08:46

Quote

Reply
Prof Trevor Marshall wrote:
Except  for the ridiculous name change, the overall report is not too bad.



It's a good thing we know more about the common cold than CFS/ME, otherwise we might all have to start talking about NRALAFABCS (Nose Running A Lot And Feeling A Bit Crappy Syndrome)



____________________
MP start May'12 (no breaks) | CFS | fatigue, depression | IBS | probable AS | last 25D=9 ng/ml Feb 2016
mvanwink5
Support Team


Joined: Fri Nov 5th, 2010
Location: Newland, North Carolina USA
Posts: 3540
Status:  Offline
 Posted: Tue Feb 10th, 2015 09:36

Quote

Reply
:D:D:D:D:D:P



____________________
Lyme joints, EMF sensitive, MP start 8/10; 25D <4ng/ml 6/19; vegetarian; olmesartan only-240mg/d, RF shielding required, My Progress: http://tinyurl.com/z2stwo8
mvanwink5
Support Team


Joined: Fri Nov 5th, 2010
Location: Newland, North Carolina USA
Posts: 3540
Status:  Offline
 Posted: Tue Feb 10th, 2015 09:41

Quote

Reply
Symptoms look a lot like EMF overexposure.



____________________
Lyme joints, EMF sensitive, MP start 8/10; 25D <4ng/ml 6/19; vegetarian; olmesartan only-240mg/d, RF shielding required, My Progress: http://tinyurl.com/z2stwo8
Prof Trevor Marshall
Foundation Staff


Joined: Fri Jul 9th, 2004
Location: Thousand Oaks, California USA
Posts: 15742
Status:  Offline
 Posted: Tue Feb 10th, 2015 09:55

Quote

Reply
:)

Joyful
Foundation Staff


Joined: Fri Jun 8th, 2007
Location: USA
Posts: 14164
Status:  Offline
 Posted: Tue Feb 10th, 2015 15:00

Quote

Reply
NRALAFABCS (Nose Running A Lot And Feeling A Bit Crappy Syndrome)
ROFLOL



____________________
Video • Be Kind, We Are All Fragile • Forums
`•.¸♥¸.•´`•.¸♥¸.•´`•.¸♥¸.•´`•.¸♥¸.•´`•.¸♥¸.•´
Paisleykilt
Member*


Joined: Sat Jun 25th, 2011
Location: British Columbia Canada
Posts: 1742
Status:  Offline
 Posted: Tue Feb 10th, 2015 16:43

Quote

Reply
Re "NRALAFABCS"
Oh geez, I hate it when I splutter half my daily allowance of coffee all over the table! Still laughing! :) PK



____________________
"Life is a whim of several billion cells to be you for a while." Groucho Marx.
MP start May'11 (2 breaks: one in December '15 and one Jan-Mar '18) | Lyme Disease '93, CFS/ME '10 | muscle/joint pain, severe fatigue, myriad neurological symptoms
David_in_UK
inactive member


Joined: Sat Jun 30th, 2012
Location: United Kingdom
Posts: 598
Status:  Offline
 Posted: Wed Feb 11th, 2015 00:53

Quote

Reply
mvanwink5 wrote:
Symptoms look a lot like EMF overexposure.

True, but then it could be you suffering from OCEMFRS (Obsessive Compulsive EMF Reduction Syndrome).



____________________
MP start May'12 (no breaks) | CFS | fatigue, depression | IBS | probable AS | last 25D=9 ng/ml Feb 2016
wrotek
member


Joined: Thu Dec 30th, 2004
Location: Wroclaw, Poland
Posts: 2915
Status:  Offline
 Posted: Wed Feb 11th, 2015 03:18

Quote

Reply
LOL so the fight the disease by changing the name :D



____________________
Lyme reflux chronic pain fatigue depression 125D36 Ph1Sep05 Ph2Oct06 Ph3Apr07 in low lux NoIRs 25D<7 Oct06
mvanwink5
Support Team


Joined: Fri Nov 5th, 2010
Location: Newland, North Carolina USA
Posts: 3540
Status:  Offline
 Posted: Wed Feb 11th, 2015 16:39

Quote

Reply
David, good point, but a process of elimination of EMF and / or use of CWS would show what symptoms are directly caused or exacerbated by EMF as the effects, at least from my experience, vanish relatively quickly from removal of EMF. Whereas non EMF caused symptoms would remain.

For instance, my hand joint stiffness has not been improved at all by any CWS use or EMF reduction efforts. Other symptoms have and continue to benefit from use of the CWS and EMF reduction / shielding.

To deal with the joint stiffness, I am going to try plan 'O.' :P

It is interesting though, the flea bites I received in November 2014 that had 'Lyme' like associated symptoms also heightened my sensitivity to the CWS power level to an extreme level, that only now is returning to the much lower sensitivity I had before the bites. So, at least in my mind there is an infection connection that I seem to have experienced (for what that anecdote is worth).

Best regards,
Mike



____________________
Lyme joints, EMF sensitive, MP start 8/10; 25D <4ng/ml 6/19; vegetarian; olmesartan only-240mg/d, RF shielding required, My Progress: http://tinyurl.com/z2stwo8
Dogster
member
 

Joined: Sun Jan 23rd, 2005
Location: Kansas USA
Posts: 490
Status:  Offline
 Posted: Thu Feb 12th, 2015 13:13

Quote

Reply
Agree with the latter post and disagree with the previous one(s).  It is making headway, and sorts things out better.  Also, there are some (or many?) of us who dont get symptoms or worse symptoms from EM exposure, or as M mentioned, dont feel better with EM elimination.  It also makes distinctions some of us have long noticed, say differentiating dx of Fm which doesnt necessarily involve PEM, or folks with (only) (or mild) chemical sensitivity who hike and such (lots of exertion) with no PEM , from CFS folks who have PEM (post-exertion) almost constantly, and certainly with a measured degree of exertion.

Also, any name change away from CFS is progress (fatigue is too general and too likely to be generally confused with being " tired"), as is any name change with the word disease (as opposed to "syndrome"). 

It ought to help the medical community work better, and work better for the patients.  We are all involved with docs and the medical system;we are  living medicalized lives.  I find the general tone of the thread rudely sarcastic, snide and irascible (or as the young folks say, "snarky").  Which, on a different topic, is why I dont read here much anymore or post anymore. 



____________________
CFS lyme RSD: pain migraine| tylenol fioricet flexeril tramadol temazepam| acidoph guaif/cold| Q| Cut D/exp Feb05| NoIR Mar05| June05 Comm Beni Q8H| July05 mino| Jan06 PH2| Aug06 1,25D=29 25D=17|
Joyful
Foundation Staff


Joined: Fri Jun 8th, 2007
Location: USA
Posts: 14164
Status:  Offline
 Posted: Thu Feb 12th, 2015 20:35

Quote

Reply
Also, any name change away from CFS is progress (fatigue is too general and too likely to be generally confused with being " tired"), as is any name change with the word disease (as opposed to "syndrome").

Thank you for this key observation Dogster.

Sorry if we come across as snarky. :(



____________________
Video • Be Kind, We Are All Fragile • Forums
`•.¸♥¸.•´`•.¸♥¸.•´`•.¸♥¸.•´`•.¸♥¸.•´`•.¸♥¸.•´
Paisleykilt
Member*


Joined: Sat Jun 25th, 2011
Location: British Columbia Canada
Posts: 1742
Status:  Offline
 Posted: Fri Feb 13th, 2015 11:30

Quote

Reply
Sorry to have offended you, Dogster.

Actually SEID (Systemic Exertion Intolerance Disease) is a fairly apt name. It does encapsulate the symptoms better than CFS/ME.

Please forgive those of us who indulged our sense of ha-ha here. Some of us don't have a whole lot else to laugh at these days. Again, sorry to have offended you or anyone else. It was certainly not intentional. Paisley



____________________
"Life is a whim of several billion cells to be you for a while." Groucho Marx.
MP start May'11 (2 breaks: one in December '15 and one Jan-Mar '18) | Lyme Disease '93, CFS/ME '10 | muscle/joint pain, severe fatigue, myriad neurological symptoms
Joyful
Foundation Staff


Joined: Fri Jun 8th, 2007
Location: USA
Posts: 14164
Status:  Offline
 Posted: Fri Feb 13th, 2015 13:00

Quote

Reply
I met the criteria for this when I started the MP.
Not so much any more.

I tolerate much more of every type of nervous system input or activity now.
Used to be only a few seconds of input/activity was all I could handle.
But now that I've apparently dealt with the root issue (neuroinflammation?), I tolerate more.

Does that mean I never had it?



____________________
Video • Be Kind, We Are All Fragile • Forums
`•.¸♥¸.•´`•.¸♥¸.•´`•.¸♥¸.•´`•.¸♥¸.•´`•.¸♥¸.•´
cmusgrove
Support Team


Joined: Sat May 12th, 2012
Location: Fort Worth, Texas USA
Posts: 752
Status:  Offline
 Posted: Sun Feb 15th, 2015 14:03

Quote

Reply
I like how they name diseases after one of the symptoms. Typical.

Many of the symptoms point to CNS dysfunction...especially poor sleep.



____________________
MP start Apr'12 (no breaks) | CFS - Epstein Barr - Lupus| fog, stiff neck, muscle spasm, peripheral numbness, nystagmus, hand coordination | Last 25D = 26 ng/ml
Prof Trevor Marshall
Foundation Staff


Joined: Fri Jul 9th, 2004
Location: Thousand Oaks, California USA
Posts: 15742
Status:  Offline
 Posted: Sun Feb 15th, 2015 14:57

Quote

Reply
But Chris, understanding the CNS requires the expertise of Neurologists, so non-Neurologists don't go there :X

Dogster
member
 

Joined: Sun Jan 23rd, 2005
Location: Kansas USA
Posts: 490
Status:  Offline
 Posted: Sun Feb 15th, 2015 15:52

Quote

Reply
Joyful,
what about physical activity (especially aerobic) then and versus now???



____________________
CFS lyme RSD: pain migraine| tylenol fioricet flexeril tramadol temazepam| acidoph guaif/cold| Q| Cut D/exp Feb05| NoIR Mar05| June05 Comm Beni Q8H| July05 mino| Jan06 PH2| Aug06 1,25D=29 25D=17|
Joyful
Foundation Staff


Joined: Fri Jun 8th, 2007
Location: USA
Posts: 14164
Status:  Offline
 Posted: Sun Feb 15th, 2015 15:59

Quote

Reply
Hi Dogster. :)

My perception is that my tolerance for physical activity is directly tied to how resilient the nervous system is at the time.

If there's been a big overwhelm (of any type), I sometimes can't tolerate the simply act of standing upright.

If nothing has upset the system, I've actually put on full waders and done a little fly casting in a stream for a couple of hours without the kinds of crashes we've come to experience with this disease. Note: taking advil ahead of time to reduce neuroinflammation seems to help now, whereas it did not help in the early years.

There are many self-designed metrics I've used to track my capacity for activity, mental or physical. I do still have limitations, but the envelope seems to be larger now.



____________________
Video • Be Kind, We Are All Fragile • Forums
`•.¸♥¸.•´`•.¸♥¸.•´`•.¸♥¸.•´`•.¸♥¸.•´`•.¸♥¸.•´
eClaire
member


Joined: Sun Sep 24th, 2006
Location: Newtownards, N. Ireland, United Kingdom
Posts: 1658
Status:  Offline
 Posted: Tue Feb 17th, 2015 02:25

Quote

Reply
I am in agreement with both Prof. Marshall and Dogster. I'd have preferred a different name and think the ME IR doctor primer more aptly nails the condition; however, I think it is generally progress.

One insight a friend had is that it should have been called MEID if they were going to go the symptom route because systemic can be construed as being related to one system or multiple systems. So multi-systemic Exercise Intolerance Disease.

At least it would not have been DIES spelled backward.

I was however disheartened by some of the reporting that just heaped on more of the same derision as when it was called CFS. Mostly, because they didn't even read the summary before reporting or if they did, are suffering themselves from cognitive deficits.

The ME/CFS community got NBC (I believe) to issue an apology on their website, and we got KOAT to remove a video that was the worst piece of mean-spirited journalism I've ever seen on this illness. (The deficit here was bad reporting and a lack of empathy of the sort that invites bullying by trolls.) Many have asked them to make an on air retraction and apology and do a report that actually focuses on the report rather than using the illness as an opportunity for entertainment.

Far too many comments to many of the serious news articles have also been disheartening.

And the ME/CFS community itself has members who, preferring the ME IR primer, are tearing apart the report and diagnostic criteria in ways that I find overly zealous and harmful to any credibility that patients may hope to gain regarding this step forward that they don't like because they want the IR primer instead. Well, I do too, but enough already. Let's demand funding for research and keep moving forward.

Can you tell I am beyond frustrated with the harping. :D

Also, some have said other diseases have PEM (e.g., lupus and MS); however (and correct me if I am wrong) and so that the criteria ought to be PENE, but I do believe that Van Ness or others has been able to show a difference between the three with PEM when it comes to aerobic testing. Not that many of us in the moderate to severe range would want to try that, and the very severe would not be able to, for fear of risking a crash. So docs will still have to rule out Lupus and MS as they have always had to do and the risk of being misdiagnosed with either of those or people with those illnesses being misdiagnosed with ME/CFS (perhaps because they have other co-morbid conditions that make diagnosing more difficult) will be there.

But what is new under the sun? This certainly is not when it comes to diagnosing illness.

Last edited on Tue Feb 17th, 2015 02:35 by eClaire



____________________
Dec 2006, Olmesartan break Feb - April 2007, ME/Fibro/PTSD/MCS/Hypermobility (since childhood; disabled 2003); 25D summer 2012 <4 (meaning unable to detect)
eClaire
member


Joined: Sun Sep 24th, 2006
Location: Newtownards, N. Ireland, United Kingdom
Posts: 1658
Status:  Offline
 Posted: Tue Feb 17th, 2015 02:38

Quote

Reply
BTW, I have been experiencing a series of crashes since July, and am as bad as I was two years ago. But two years ago, which seemed to be a crash related to the crash following my mother's death, I started the year off with an incredibly long bout of a norovirus (I believe was caused--the length of the bout--by using sodium bicarbonate to reduce potassium levels) combined with a bad reaction to paint, which also lasted months. This year I started off the year with a virus that lasted over a week, and I think I tried to do too much following feeling a bit better, when I was still in that very crashed state from the end of July. Who knows? I'm so tired of coping with this.

And so while I no longer feel like death, I am still not very functional after 8+ years on the MP. That said, I am grateful for the progress I have made.

Last edited on Tue Feb 17th, 2015 02:41 by eClaire



____________________
Dec 2006, Olmesartan break Feb - April 2007, ME/Fibro/PTSD/MCS/Hypermobility (since childhood; disabled 2003); 25D summer 2012 <4 (meaning unable to detect)

 Current time is 14:09
Page:    1  2  Next Page Last Page  



* We can help you understand chronic disease, but only your physician is licensed to give you medical care *

Powered by WowBB 1.7 - Entire site Copyright © 2004-2020 Autoimmunity Research Foundation, All Rights Reserved
Click here to view our PRIVACY POLICY
Page processed in 0.4828 seconds (97% database + 3% PHP). 18 queries executed.