ME and PEM

[@PenOtration]

Diagnosis of (ME) 6 year ago, this is such a debilitating symptom for me personally and one of the hardest to manage and cope with. The excitement and exhilaration of a nice walk or activity followed be pure misery and Pain. Thank you for your video.❤

[@carolinewalls4297]

Thank you for this video, I am another person with Long Covid and trying to understand what is happening, this is how I feel with varying levels of severity depending on what I have done. It's so hard to describe it to others.

[@norgesme-forening-rogaland5631]

Dear Caroline. Thank you for your comment. So sorry to hear you are struggling with Long Covid and that you recognise PEM. Yes, it's hard to explain to others, and difficult for others to understand. But awareness is increasing! Best wishes to you and take good care!

[@jo-annahicks3324]

Excellent video on this very baffling condition! I do prefer the term Post exertional Neuro-Immune Exhaustion (PENE) though. I have had ME/CFS for 36+ yrs....and this is the hardest thing for people to understand about my condition...as they only see, or hear me in an Adrenaline Surge...they don't see the PEM/PENE aftermath

[@claredunn757]

This is me!!!! I’ve have going through long covid and trying to tell people. I tried to go back to work per doctor it’s been days still trying to recover.. yes good days and bad days!!! Got to go to a specialist, holy cow. I was going to try to sign up for disability... good grief this is crazy!! Spot on!!! I have to reserve my energy... people tell me to exercise, a 30 min power walk made me feel worse..

[@norgesme-forening-rogaland5631]

Thank you for your comment Clare Dunn. So sorry to hear you're going through Long Covid. Perhaps the resources from Long Covid Physio which among other explore PEM in Long Covid might be of use to you? longcovid.physio Best wishes to you!

[@olmo4767]

this moring I worked a little, walked a few blocks, and there it is, PEM!

[@colleensteckel616]

This is an informative video about PEM. Good method of sharing information. My immune system crashes after overdoing. It stops holding back viral and bacterial infections which too often leads to cold sores, ear/sinus/bladder infections as well as yeast and other fungal overgrowth. Post exertion malaise doesn't seem to cover that aspect adequately, so I prefer to use the post exertional neuroimmune exhaustion description found in the International Consensus Criteria. To keep my immune system working (as much as it can with having ME), I need to avoid exacerbation of ME which includes "susceptibility to viral infections with prolonged recovery periods". From the IC Primer: PENE: A. Post-Exertional Neuroimmune Exhaustion (PENE pen׳-e) This cardinal feature is a pathological inability to produce sufficient energy on demand with prominent symptoms primarily in the neuroimmune regions. Characteristics are: 1. Marked, rapid physical and/or cognitive fatigability in response to exertion, which may be minimal such as activities of daily living or simple mental tasks, can be debilitating and cause a relapse. 2. Post-exertional symptom exacerbation: e.g. acute flu-like symptoms, pain and worsening of other symptoms 3. Post-exertional exhaustion may occur immediately after activity or be delayed by hours or days. 4. Recovery period is prolonged, usually taking 24 hours or longer. A relapse can last days, weeks or longer. 5. Low threshold of physical and mental fatigability (lack of stamina) results in a substantial reduction in preillness activity level. IC Primer: d3n8a8pro7vhmx.cloudfront.net/meadvocacy/pages/2292/attachments/original/1554817421/Myalgic_Encephalomyelitis_International_Consensus_Primer_2012.pdf?1554817421 Would love to see a similar version which covers PENE.

[@vitanavitas9922]

For me,Reading your comment is like directly like looking into a mirror.Thankyou so much for this ☝️

[@jo-annahicks3324]

I have always thought that the term Post Exertional Malaise always sounded like 'Post Exertional Laziness'!...so I definately prefer PENE..(not to be confused with the spanish word for penis...sidenote for people googleing the term....lol). On a personal note...it sounds like you could benefit from an L-Lysine/Astragalus/Olive Leaf combo....and maybe the occasional fluconazole course...as you could have Systemic Candidiasis, as well. There is a book, by the same author, as the famous 'The Yeast Connection' book...Dr William Crook ...'Chronic Fatigue Syndrome and the Yeast Connection'...a bit outdated...but some very good info.....hope that helps...

[@DanDan-ol4hv]

Wow! I can now help others understand it now. Just watch this.

[@mikebarwick9428]

Great explanation for me who supports some people with ME - well done and thank you

[@norgesme-forening-rogaland5631]

Thank you, mike! So glad you liked it.

[@marijkedejong5629]

Hi, Im in a facebook group for ME patients en someone shared this video. Very clear explanation, thank you! I've translated it into Dutch, do you want to receive the translation so more people can benefit from your video?

[@norgesme-forening-rogaland5631]

Hi mizz rooza and thank you for your comment. We are glad you liked the film. It's great that you've translated it to Dutch. Feel free to share your translation in the comments.

[@SolarVibeEnergy]

Simply, EXCELLENT!

[@norgesme-forening-rogaland5631]

Thank you, H S. So glad you liked it!

[@evanlistopad7970]

Is there a test for PEM/PESE/PENE? I've heard that comparing results of a metabolic stress test (treadmill and breathing mask) two days in a row can spot PEM sufferers. Normal folks do the same or better the second day. Even mild PEM means a dip in metabolic rate. Thoughts? P.S. Methylene Blue - not a cure, but definitely helps. Titrate your dose and start small.

[@jorienknulst4309]

Thank you for this clip! I shared it with my friends and my caretakers!

[@vegger2795]

Yep, this is me with long covid. I've had this symptom for a year and a half now, eversince my infection. It's not as bad as it was during the first few months, but I'm still not back to normal.

[@norgesme-forening-rogaland5631]

So sorry to hear that V Egger.

[@carinalindstaf2464]

Very informative :)

[@norgesme-forening-rogaland5631]

Thanks! We're so glad you liked it, Carina!

[@stb3987]

I am fatigued after exercise and need to take a nap. Long walks make me severily fatigue whereas my friends look energised. They comment that I always look fatigued with saddened eyes. I hate Fotos because my eyes look very tired even when I try to fix my face. My smile looks tired. People don't believe me, doctors can't do anything because they don't find anything. And there is no therapy. I had this condition long before COVID appeared. My throat is sore all the time and lymph nodes on the enck area enlarged with no reason.

[@opedromagico]

keto-carnivore made it a lot better for me

[@chantalsomm6574]

can you activate the subtitles of the video? The person who translates for Millions Missing France should be able to put the subtitles in French :-)

[@norgesme-forening-rogaland5631]

Dear Chantal. Thank you so much to you and MillionsMissing France for helping with a translation into French! This film is uploaded with the English subtitles, so new subtitles can't be added to this version. But we will be uploading the film without the English subtitles soon, and can then add subtitles in several languages. We're working on it and hope it will help us reach an even bigger audience :-) If you could send the French translation to [e-mail] we'll make sure to add them. Thanks again!

[@chantalsomm6574]

@@norgesme-forening-rogaland5631 it's not possible with autogenerate subtitles :-( The "autotraslate" option must be disabled

[@norgesme-forening-rogaland5631]

Please send us an email to [e-mail] and we'll figure this out :-)

[@chantalsomm6574]

@@norgesme-forening-rogaland5631 ok :-)

[@crispylemon7197]

dababays better

[@ryanneilcarr]

I have it and this is deffo not an accurate discription of M.E. Its total and utter bullshit.

[@SolarVibeEnergy]

Don't forget his only deals with the PEM part we with it know how much multitude of other symptoms there is. Especially the cognitive symptoms.

[@ryanneilcarr]

@@SolarVibeEnergy nah its just false info. You cant diagnose it with those CFS criterias only with hydes criteria. People who dont pass hydes dont even have M.E. Maybe misdiagnosed CFS but its not M.E. PEM isnt the key symptom of M.E. which is muscle fatigue. PEM is the key symptom to the CFS definitions. ME and CFS aint related. ME is an acute onset brain and spinal cord infection by an enterovirus. CFS is not. The people who conflate. Dont know what they are talking about. Half the people dont even have M.E.

[@sisypheanmxe8774]

@@ryanneilcarr CFS is literally an alternate name to ME. They're the same condition.

[@ryanneilcarr]

@@sisypheanmxe8774 deffo isnt. CFS is based on a syndrome with symptoms common to hundreds of different illnesses. M.E. is Nonparalytic Poliomyelitis. Loads are misdiagnosed because of the conflating of these terms. M.E. is an enteroviral disease. CFS is a fatigue definition. Also you are excluded from the definition with M.E. as CFS is a diagnosis of exclusion. M.E. doesnt cause chronic fatigue. It causes severe muscle fatigue. If the person has chronic fatigue they aint an M.E. Patient.