Genetic and Rare Diseases Information Center: ME webpage

Andy · Mar 2, 2019

Just posting to highlight they have one, https://rarediseases.info.nih.gov/diseases/12953/myalgic-encephalomyelitis, and it's not bad.

Why they list it, "GARD includes diseases that are not rare if genetics plays a role in the condition. We also include conditions when information is lacking from other sources."

Sly Saint · Mar 3, 2019

Andy said: ↑

Just posting to highlight they have one, https://rarediseases.info.nih.gov/diseases/12953/myalgic-encephalomyelitis, and it's not bad.

Why they list it, "GARD includes diseases that are not rare if genetics plays a role in the condition. We also include conditions when information is lacking from other sources."
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What a good website. They even ask for suggestions to add re research, organisations etc

Webdog · May 11, 2019

Got an email from GARD (NIH) this week. They agreed to remove the statement that, in most cases, symptoms of CFS lessen over time. The relevant bits of the email follow (bolding and spacing mine):

GARD said:

Dear ****,

You contacted the Genetic and Rare Diseases Information Center (GARD) about chronic fatigue syndrome (CFS). You commented that a sentence in our treatment section, "In most cases, symptoms of CFS lessen over time," has no reliable evidence to support and is based on old anecdotal reports. You asked us to remove this statement or back it up with reliable research using a modern disease definition.
...
Thank you for reaching out to us and providing your valuable feedback. For the moment we have removed this sentence from our web page and plan to review this information with your comments in mind.

We would like to let you know that we are currently in the process of redesigning our website and currently we are not able to add new content. Please know that we have added your comments to our database so as to pay them special attention when we resume making changes to our web pages.
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https://rarediseases.info.nih.gov/diseases/7121/chronic-fatigue-syndrome

Sly Saint · Apr 16, 2020

Merged thread

Update April 2020

Myalgic encephalomyelitis/chronic fatigue syndrome

Not a rare disease

Other Names:
Systemic exertion intolerance disease; ME/CFS; Chronic fatigue syndrome/ myalgic encephalomyelitis
Summary

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is an umbrella term that includes both myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS). It is a serious, chronic and complex disease that affect many systems of the body and can profoundly impair the daily activities. The main symptom is a disabling fatigue that does not improve with rest and that last at least 6 months.[1][2] Fatigue may get worse after activities, which is known as post-exertional malaise. Other signs and symptoms may include muscle pain, joint pain, concentration and memory problems, headaches, sleep problems, fever, sore throat, and/or tender lymph nodes.[3][1] It generally occurs in young adults (20 to 40 years of age) and is twice as common in women.[1][4][2][5]

The exact cause is not known, but symptoms may be triggered by an infection.[4][1] Diagnosis is based on the most specific features and there are no specific laboratory tests. There is still no cure or effective treatment for this condition but there are several clinical trials.[3][6][5]

While the term ME/CFS is widely used, there is still a debate in the medical literature about the relationship between myalgic encephalomyelitis and chronic fatigue syndrome and there is no universally accepted definition.[7] The term “systemic exertion intolerance disease” was proposed as new term for both diseases instead of ME/CFS.[6]
Last updated: 4/14/2020
Cause

The cause of myalgic encephalomyelitis/chronic fatigue syndrome is not known. Some researchers have proposed that this condition is caused by viral infections or by immunological, hormonal or psychiatric problems. However, none of these possible explanations are proven.[4][1] Some researches believe that there may be a genetic predisposition for this condition and stress-related events act as triggers.[4][6]

Last updated: 4/14/2020
Do you have updated information on this disease? We want to hear from you.
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more info on Diagnosis, Treatment and Research (written and audio)
https://rarediseases.info.nih.gov/diseases/7121/chronic-fatigue-syndrome

wigglethemouse · Apr 15, 2020

Here is a link for the 2017 version on the Wayback machine.
https://web.archive.org/web/2017020...ih.gov/diseases/7121/chronic-fatigue-syndrome

The biggest change in the 2020 version seems to be the use of "Myalgic encephalomyelitis/chronic fatigue syndrome" in the title and elsewhere. Previously the title was "Chronic fatigue syndrome". Additonally the term "Chronic fatigue immune dysfunction syndrome" looks to be retired.

This section looks to be new. Anyone know any more about their work and interest in ME?

Patient Registry

The Autoimmune Registry supports research for Myalgic encephalomyelitis/chronic fatigue syndrome by collecting information about patients with this and other autoimmune diseases. You can join the registry to share your information with researchers and receive updates about participating in new research studies. Learn more about registries.
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What a shame the first link about learning is to Mayo. Note this link was also there in the 2017 version.

The Mayo Foundation for Medical Education and Research also provides information about chronic fatigue syndrome. Click on the link above to view this information page.
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Where the treatment tab states (on MAYO website, not GARD).

Graded exercise. A physical therapist can help determine what exercises are best for you. Inactive people often begin with range-of-motion and stretching exercises for just a few minutes a day. Gradually increasing the intensity of your exercise over time may help reduce your hypersensitivity to exercise, just like allergy shots gradually reduce a person's hypersensitivity to a particular allergen.
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Sunshine3 · Apr 20, 2020

How or who could we approach to get Mayo Clinic to update their website info on ME. It actually really upsets me as a severe patient that they are still touting GET. Any suggestions???

wigglethemouse · Apr 20, 2020

Sunshine3 said: ↑

How or who could we approach to get Mayo Clinic to update their website info on ME. It actually really upsets me as a severe patient that they are still touting GET. Any suggestions???
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@dave30th has written a couple of blogs on it. This is a link to the latest.
https://www.virology.ws/2019/12/10/trial-by-error-mayo-clinics-crappy-website/

Here is a S4ME thread
https://www.s4me.info/threads/david-tuller-trial-by-error-mayo-still-champions-get.5258/

I can't remember if he wrote a letter to Mayo Clinic or not? I believe a couple of patients have written to them.......

Perrier · Apr 20, 2020

Sly Saint said: ↑

Merged thread

Update April 2020

more info on Diagnosis, Treatment and Research (written and audio)
https://rarediseases.info.nih.gov/diseases/7121/chronic-fatigue-syndrome
Click to expand...

psychiatric problems?

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