TN and CFS/EB - Petitioning to the CDC for research money

General General TN & GPN (Old Site)
1

Hi all,

My story is a long one and there is a lot of info to write up....and I want to and I will, I promise. In a nutshell I was wondering how many of you out there with TN have Chronic Fatigue Syndrome or Epstein Barr. My boyfriend has been doing a lot of reading on CFS/EB since we both have it and there is a study showing that they could be related to or caused by TN. CFS/EB doesn't get any research money, it gets $1 million and male pattern baldness gets $4 mill. I want to start a petition with the CDC to get more research funding for TN, CFS and EB. Would any of you on this forum be willing to sign a petition if I were to start one for research?

The symptoms my CFS/EB specialist asked me if I had while we were waiting for the blood-work and for my disability are below. Do any of you with TN maybe have these symptoms and not think anything of it? I didn't even know what CFS was until I was diagnosed.

Thank you in advance!

do you have these other symptoms: pst-exertional malaise, sore throats, sleep disorder, joint or muscle pain, impaired concentration, slowed speed of processing new information, sinus problems, fevers, chills, lymph node swelling, IBS, nausea, bloating, dizziness, palpitations, respiratory irregularities cant catch you breath flu like symptoms hypersensitivity to lights, chemicals, foods; hospitalized for anything in the past;

2

I believe I got TN because I read many of us have loaded gene for this. Mine was set off by many whiplash incidents, and trigger pulled by the last one in the dentist chair.

I have symptoms of CFS that come and go…

Thanks to this post, I’m going to see my doctor about checking my labs to rule out other things. I thought I would go crazy lately with so much extreme tiredness etc.

How do you think you can get the CDC or WHO to care about 2 invisible illnesses?

I’ll sign.

And thanks to making me once again , to look over and look at this checklist and do more CFS research for myself! Even if to rule it out.

3

Hi,

I had Epstein Barr in 1998, was very ill for 4 months, and have had bouts of chronic fatigue ever since. In 2002 I was diagnosed with cancer, fortunately in an early stage. I had my first TN attack in 2011, had no idea what it was. Then in March 2012 (just over a year later) atypical TN started. That has been with me 24/7 for almost 2 years now, plus random attacks of classic TN. Prior to having Epstein Barr I'd always been healthy. After that, my health never fully recovered - fatigue, cancer, frequent migraines, now the TN ..... makes you wonder, right?

4

Hi,

My apologies I'm just responding. I've been very sick the last week and not really online much.

Hmm interesting about it perhaps being genetic. I'll have to look into that and ask my family if they know anyone that has TN. I'd never hear of it until I got it.

I'm glad that my post has at least made you think about getting tested for CFS, even if it is to rule it out. I hope you don't have it, it's awful. And made worse with the TN.

I'm not sure how I'm going to get them to listen but I am def going to try! I will get a link to you once I finish writing up the letter an petition.

All the best and hope you're having a healthy day.


Kc Dancer Kc said:

I believe I got TN because I read many of us have loaded gene for this. Mine was set off by many whiplash incidents, and trigger pulled by the last one in the dentist chair.

I have symptoms of CFS that come and go.....

Thanks to this post, I'm going to see my doctor about checking my labs to rule out other things. I thought I would go crazy lately with so much extreme tiredness etc.

How do you think you can get the CDC or WHO to care about 2 invisible illnesses?

I'll sign.

And thanks to making me once again , to look over and look at this checklist and do more CFS research for myself! Even if to rule it out.
5

Hi Obsidian,

Wow...I'm so sorry you have had so many issues and that you had to battle cancer on top of everything. I'm glad to hear it was caught in the early stage.

I have migraines as well...hmm it really does make you wonder! I think that I got the CFS/EB first and then came down with the TN. Ever since getting CFS/EB I have had many health problems too.

I'm going to keep researching this and get back to you once I do.

Thanks for your reply!

Have a healthy day

Brandi



Obsidian said:

Hi,

I had Epstein Barr in 1998, was very ill for 4 months, and have had bouts of chronic fatigue ever since. In 2002 I was diagnosed with cancer, fortunately in an early stage. I had my first TN attack in 2011, had no idea what it was. Then in March 2012 (just over a year later) atypical TN started. That has been with me 24/7 for almost 2 years now, plus random attacks of classic TN. Prior to having Epstein Barr I'd always been healthy. After that, my health never fully recovered - fatigue, cancer, frequent migraines, now the TN ..... makes you wonder, right?

6

Hi Brandi

I'd be very interested to know what you find out from your research. I've wondered if all these health issues might be connected in some way. Keep us posted!

Take care

Obsidian

7

If you haven't seen the book Osler's Web (1996)...it's an interesting read that examines the CFS/EB journey from some early outbreaks of what was called the "yuppie flu".

My husband has dealt with CFS/EB for many years. He struggles daily with energy and is on disability though he can work a few hours in the afternoon in our shop 3-4 days a week.

Interestingly I later tested positive for EB/CMV during a time I went through some MS-like symptoms for several weeks. I have some minor exacerbations with that and then several years later TN hit me.

Anyway, during my weeks of trying to figure out what my body was doing in that initial attack, I read Osler's Web and started to follow the research of Dr. John Martin who was very involved in digging into the mystery of CFS.

I don't know what he is currently doing in terms of research but in the late 90s he was exploring what he called stealth viruses. As I recall, it was basically the idea of viruses that piggyback on the immune system traveling undetected and wreaking havoc in their wake.

What I find of interest with that idea is that my husband, in later years, was also found to have bacteria related to Lyme disease and one specialist said that the bands that confirm the Lyme in the western blot blood test can not show up clearly because of other underlying viruses like EBV resulting in false negatives. Such a puzzle to unravel...

This topic caused me to do a quick search for Dr Martin again. He does have a website outlining his work and research...

http://www.ccid.org/

8

For those concerned with researching Chronic Fatigue Syndrome, it may be in order to search for the term Myalgic Encephalomyelitis (ME). The term is gaining currency despite the considerable controversy that surrounds both CFS and ME. I am in contact with a UK layman research analyst who deals with this disorder in her son. An abstract of one of the articles she forwarded to me on the subject is below:

Published under Creative Commons

http://shortreports.rsmjournals.com/content/4/1/4.full

PDF: http://shortreports.rsmjournals.com/content/4/1/4.full.pdf+html

doi: 10.1258/shorts.2012.012051 J R Soc Med Sh Rep January 2013 vol. 4 no. 1 4

Author Affiliations

1Barts and The London School of Medicine and Dentistry, Queen Mary University London, London, UK
2Wolfson Institute of Preventive Medicine, Barts and The London School of Medicine and Dentistry, Queen Mary University London, London, UK

Correspondence to: Peter D White. Email: ■■■■■■■■■■■■■■■■■■■■

Abstract

Objectives

Chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME), has provoked much controversy and led to arguments between the medical profession and patient organizations. A particular focus for debate is the categorization of the condition as physical or psychological in its nature. The aim of this study was to compare how the written media, patient organizations and medical authorities regard the illness.

Design

Content analysis of newspaper articles, ME patient organization websites, and medical websites and textbooks were assessed by two independent assessors.

Setting Three national UK newspapers, UK ME websites, and UK medical websites and textbooks, were accessed during 2010.

Participants 146 source files were scored from 36 patients' organizations, 72 media articles and 38 medical authorities.

Main outcome measured

The overall opinion of an article or website was rated using a five point Likert scale, from ‘extremely psychological’ (scored as 1), ‘moderately psychological’ (2), ‘both psychological and physical’ (3), ‘moderately physical’ (4) or ‘extremely physical’ (5).

Results

Eighty-nine percent (32 of 36) of ME patient organizations considered the illness to be physical, compared with 58% (42/72) of newspaper articles, and 24% (9/38) of medical authorities. Sixty-three percent (24/38) of medical authorities regarded the illness as both physical and psychological. The inter-group differences of the Likert scores were statistically significant (χ2 = 27.37, 2 df, P < 0.001).

Conclusion

The considerable disagreement, particularly between ME patient organizations and medical authorities, may help to explain the gulf in understanding between doctors and patients and the consequent reluctance of some patients to engage in behavioural treatments.

9

Personally, I feel when it comes to TN research, we need to petition the Federal Government to properly fund the NIH division of Stroke, and Neurological Diseases. This division was doing some research on TN, but when their budget was cut, it fell by the way side.

The CDC, and WHO are tasked with dealing with health issues, that can result in major pandemics. Trying to get them to list TN, well, personally, I feel it would be a waste of time, as it is not within the focus of their mission. If someone here can tell me how to use one of the petition sites, I will gladly start the petition to demand that the funding to the NIH division of Stroke, and neurological diseases be restored.

10

I do appreciate that the term Myalgic Encephalomyelitis (ME) versus Chronic Fatigue Syndrome (CFS) gives a more serious tone to the suffering those with these conditions endure.

One writer described the inadequacy of the name CFS to calling pneumonia Chronic Cough Syndrome!

11

Will do! This week has been very busy as I'm moving this weekend but next week I will have some time to focus and get back to everyone.

In the meantime have a great weekend!

Obsidian said:

Hi Brandi

I'd be very interested to know what you find out from your research. I've wondered if all these health issues might be connected in some way. Keep us posted!

Take care

Obsidian

12

Hi Laura,

Wow...thanks for this! My boyfriend has mentioned different names that people have called CFS over the years and has mentioned some scientist that have been doing work over the years. I'll show him your post and see if he's heard of the book and scientist you mentioned. I will also head over to the link and purchase the book asap.

I was on disability for 3 1/2 months and I finally just had to come back to work. Thankfully my office manager moved me to a better position that is more friendly to my illnesses since there are so many of them.

This is such a puzzle indeed....I'm going to get my boyfriend to type out what he's read and found out and get back to you, I think you'd find it of interest. (Actually I think everyone here would). Bear with me since I"m moving this weekend but I will be back in touch with more details..

It's weird because I just randomly came down with some symptoms that triggered him to put it together with EB. I'm so glad that he did as I was on the brink of collapsing with the CFS.....ugh The Lyme disease connection is very interesting too....


Laura Crumpacker said:

If you haven't seen the book Osler's Web (1996)...it's an interesting read that examines the CFS/EB journey from some early outbreaks of what was called the "yuppie flu".

My husband has dealt with CFS/EB for many years. He struggles daily with energy and is on disability though he can work a few hours in the afternoon in our shop 3-4 days a week.

Interestingly I later tested positive for EB/CMV during a time I went through some MS-like symptoms for several weeks. I have some minor exacerbations with that and then several years later TN hit me.

Anyway, during my weeks of trying to figure out what my body was doing in that initial attack, I read Osler's Web and started to follow the research of Dr. John Martin who was very involved in digging into the mystery of CFS.

I don't know what he is currently doing in terms of research but in the late 90s he was exploring what he called stealth viruses. As I recall, it was basically the idea of viruses that piggyback on the immune system traveling undetected and wreaking havoc in their wake.

What I find of interest with that idea is that my husband, in later years, was also found to have bacteria related to Lyme disease and one specialist said that the bands that confirm the Lyme in the western blot blood test can not show up clearly because of other underlying viruses like EBV resulting in false negatives. Such a puzzle to unravel...

This topic caused me to do a quick search for Dr Martin again. He does have a website outlining his work and research...

http://www.ccid.org/

13

Hi Richard - wow thanks for this! I'm going to read through all of this, digest it and get back to you. I hadn't thought of searching for ME...I will dig in to this over the weekend. I feel like my boyfriend mentioned ME to me the other day but my memory is so foggy these days from the CFS it's hard to keep anything straight. I feel like it takes me a very very long time to comprehend anything...

Be in touch soon - thanks again for this!

Richard A. "Red" Lawhern said:

For those concerned with researching Chronic Fatigue Syndrome, it may be in order to search for the term Myalgic Encephalomyelitis (ME). The term is gaining currency despite the considerable controversy that surrounds both CFS and ME. I am in contact with a UK layman research analyst who deals with this disorder in her son. An abstract of one of the articles she forwarded to me on the subject is below:

Published under Creative Commons

http://shortreports.rsmjournals.com/content/4/1/4.full

PDF: http://shortreports.rsmjournals.com/content/4/1/4.full.pdf+html

doi: 10.1258/shorts.2012.012051 J R Soc Med Sh Rep January 2013 vol. 4 no. 1 4

Author Affiliations

1Barts and The London School of Medicine and Dentistry, Queen Mary University London, London, UK
2Wolfson Institute of Preventive Medicine, Barts and The London School of Medicine and Dentistry, Queen Mary University London, London, UK

Correspondence to: Peter D White. Email: p.d.white@qmul.ac.uk

Abstract

Objectives

Chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME), has provoked much controversy and led to arguments between the medical profession and patient organizations. A particular focus for debate is the categorization of the condition as physical or psychological in its nature. The aim of this study was to compare how the written media, patient organizations and medical authorities regard the illness.

Design

Content analysis of newspaper articles, ME patient organization websites, and medical websites and textbooks were assessed by two independent assessors.

Setting Three national UK newspapers, UK ME websites, and UK medical websites and textbooks, were accessed during 2010.

Participants 146 source files were scored from 36 patients' organizations, 72 media articles and 38 medical authorities.

Main outcome measured

The overall opinion of an article or website was rated using a five point Likert scale, from ‘extremely psychological’ (scored as 1), ‘moderately psychological’ (2), ‘both psychological and physical’ (3), ‘moderately physical’ (4) or ‘extremely physical’ (5).

Results

Eighty-nine percent (32 of 36) of ME patient organizations considered the illness to be physical, compared with 58% (42/72) of newspaper articles, and 24% (9/38) of medical authorities. Sixty-three percent (24/38) of medical authorities regarded the illness as both physical and psychological. The inter-group differences of the Likert scores were statistically significant (χ2 = 27.37, 2 df, P < 0.001).

Conclusion

The considerable disagreement, particularly between ME patient organizations and medical authorities, may help to explain the gulf in understanding between doctors and patients and the consequent reluctance of some patients to engage in behavioural treatments.

14

Hi!

Maybe TN alone wouldn't get their attention but if we link it perhaps to something like CFS, EB or ME it may work. I'm looking into a few different ways to start a petition and will share with you. Thank you for wanting to start one - I will get back to you next week. (I'm moving this weekend..fun times with tons of snow in NY).

saraiderin said:

Personally, I feel when it comes to TN research, we need to petition the Federal Government to properly fund the NIH division of Stroke, and Neurological Diseases. This division was doing some research on TN, but when their budget was cut, it fell by the way side.

The CDC, and WHO are tasked with dealing with health issues, that can result in major pandemics. Trying to get them to list TN, well, personally, I feel it would be a waste of time, as it is not within the focus of their mission. If someone here can tell me how to use one of the petition sites, I will gladly start the petition to demand that the funding to the NIH division of Stroke, and neurological diseases be restored.

15

Hi again Laura - I looked up ME and you're right that's such a better name for it! I feel like people would take it so much more seriously if we called it that....I'm going to have to maybe switch the way I talk about it.


Laura Crumpacker said:

I do appreciate that the term Myalgic Encephalomyelitis (ME) versus Chronic Fatigue Syndrome (CFS) gives a more serious tone to the suffering those with these conditions endure.

One writer described the inadequacy of the name CFS to calling pneumonia Chronic Cough Syndrome!