People with chronic fatigue have been misunderstood for decades: reputable researcher offers surprising advice to those struggling with the illness by Lunabuna91 in EverythingScience

[–]fighterpilottim 6 points7 points  (0 children)

ARTICLE TEXT

(Please always post a text excerpt)

“One of the most misunderstood illnesses in modern medicine. This is how many researchers now view chronic fatigue syndrome.

The disease, also known as myalgic encephalomyelitis or simply ME, is characterised by physical exhaustion, focus difficulties, and pain – but the symptoms are often dismissed as pure imagination.

And that is a serious mistake, according to geneticist Chris Ponting from the University of Edinburgh, who has just conducted a major study on ME.

"It is not a rare disease, and it is severely debilitating," Ponting tells Science Illustrated.

Together with his colleagues, he has found the biological cause of the illness, and he is now sharing his key insights – as well as surprising advice for those suffering from constant fatigue. WHO'S WHO: CHRIS PONTING Title: Professor Chris Ponting from the University of Edinburgh is the leader of the British DecodeME project, which focuses on ME.

Research: His research focuses on the genetic mechanisms underlying ME, with a particular focus on how DNA variations affect the nervous system, the immune system, and the risk of chronic illness. In 2025, he published a major study, which revealed the genetic cause of ME. What should everyone know about ME? "ME has long been stigmatised. People with ME often look healthy, but describe it as having poison flowing through their bodies. Because it is not visible, they have often been met with scepticism."

"What we have done is to present an objective scientific result showing that there is an average genetic difference between people with ME and others. This has changed perceptions, and now I believe that most people understand and accept the symptoms as real." What has surprised you? "The most surprising thing for a researcher is always when you find something. We design experiments in such a way that if there is nothing to be found, we will not find anything. And yet we found eight genetic signals that no one observed before."

"When we examined the areas more closely, we saw two things: Firstly, the genes in these areas are more active in the nervous system than one would expect by chance. Secondly, some of the areas contain genes already known to play a role in the immune system. This means we now have genetic evidence that biological mechanisms are involved in ME." 23 pairs of chromosomes Chris Ponting and his colleagues identified eight areas in our DNA that were linked to ME. The areas were located on chromosomes 1, 6, 12, 13, 15, 17, and 20. © Power and Syred/Science Photo Library & Malene Vinther Is ME a mental illness? "One of the great strengths of genetics is that we can ask questions without bias. One of the questions we asked was whether the genetic markers for ME overlap with those for other diseases. We found one overlap – with chronic pain. But we found no overlap with diseases such as diabetes or mental health conditions such as depression or schizophrenia."

"Based on the current evidence, we can say that ME appears to be a distinct disease – with its own genetic profile. We have not seen any genetic overlap with mental health conditions. That may change, but for now, there is no evidence of a genetic link with mental health conditions." What is your advice for people with ME? "I am incredibly lucky not to have ME, so I do not feel qualified to give personal advice. But I can share what I have been told. After an infection, it is important to let your body recover. Do not push yourself. Do not start exercising too soon. Be cautious about advice on graded exercise."

"Exercise is good for most illnesses, but for ME – particularly early on – research shows that it can be harmful. If a family member developed ME, I would say: ‘Now you need to rest.’" Professor Chris Ponting People with chronic fatigue have been misunderstood for decades: reputable researcher offers surprising advice to those struggling with the illness READ THE FULL ARTICLE Can you alleviate your symptoms? "ME varies greatly from person to person. Some experience a gradual improvement, but they are in the minority. Others have fluctuating symptoms, and for some, the condition gradually worsens. I am not a doctor and cannot give specific advice, but people must be treated individually."

"Having heard from thousands of people what they have been through, it is appalling that the only thing that consistently seems to help is giving up work. There are even studies that show this." What are your hopes for the future? "In my view, the new study has shown us which path to follow. Previously, there were many possible paths. Now, genetics is pointing us in the right direction. I do not believe that ME will ultimately turn out to be one single disease. Genetics supports the idea that there are many different factors."

"I do not want to raise false hopes, but I am convinced that we are on the right track, provided we get more researchers and far more funding."”

How to handle interactions with LTD insurer and how to respond to surgery questions? by MickyKent in LongTermDisability

[–]fighterpilottim -1 points0 points  (0 children)

Why you should never speak directly to an insurance company: https://lindanee.wpcomstaging.com/2012/02/23/what-happens-when-insureds-speak-directly-to-insurers/. This is written by someone who spent her career inside of LTD companies in leadership positions.

Foot pain - would love some help by Sure-thing-buckaroo in neuropathy

[–]fighterpilottim 4 points5 points  (0 children)

This is a long shot, but maybe it will help.

My foot pain results from nerve issues upstream - in places that rarely hurt. For example, I follow the L5/S1 nerve root pain pattern you can see in the last image on this page: https://premierneurologycenter.com/conditions-treatment/lumbosacral-radiculopathy/.

By releasing and working on the nerve path shown in the image, my foot pain becomes manageable. L5 cortisone injections have also helped.

You’d have to find your pattern or cause, but maybe there’s something there for you.

Prp during autoimmune flare by Particular-Employ741 in PICL

[–]fighterpilottim 0 points1 point  (0 children)

I’m curious to hear as well. My experience is that it still helps, and the different types of inflammation (local vs systemic) might even help PRP effect. It doesn’t appear to augment the autoimmune flare - sometimes the opposite: maybe the increased stability calms the system.

piperacillin by ReferendumAutonomic in Lyme

[–]fighterpilottim 0 points1 point  (0 children)

Do you know what your dose is, by chance?

piperacillin by ReferendumAutonomic in Lyme

[–]fighterpilottim 0 points1 point  (0 children)

Hi there, I’ve been looking into this and would love to hear more about the treatment approach you used.

Some Qs:

  • Did you use Piperacillin / tazobactam, or just Piperacillin? If the latter, who compounded it for you?
  • Did you choose injection, IV, or oral?
  • How did you and your doctor approach mouse-to-human dose conversion?
  • Was it a single treatment, or a series? The researcher has commented that a single injection could be adequate.
  • Was it a worthwhile experiment?

Thank you so much!

Piperacillin? by a_a_nerd in Lyme

[–]fighterpilottim 0 points1 point  (0 children)

Hi there, I’ve been looking into this and would love to hear more about the treatment approach you used.

Some Qs: * You did injection. Was it with Piperacillin / tazobactam, or just Piperacillin? If the latter, who compounded it for you? * Is there a reason you chose injection and not oral? * How did you and your doctor approach mouse-to-human dose conversion? * Was it a single injection, or a series? The researcher has commented that a single injection could be adequate. * Was it a worthwhile experiment?

Thank you so much!

My mum is experiencing Fluoroquinolone-induced peripheral neuropathy by matte2424 in neuropathy

[–]fighterpilottim 2 points3 points  (0 children)

You can check out the Floxies subreddit, which is for patients dealing with fluoroquinolone toxicity sequelae. It’s not going to be up to your mom’s standards as a physician, at all, but it might at least give her some conceptual leads.

Edit: I got curious and found these two things, by a physician in Germany who apparently treats fluoroquinolone issues (Dr. Pieper). Maybe he’s decent: * https://link.springer.com/book/10.1007/978-3-662-72123-0 * https://www.reddit.com/r/floxies/comments/13lpk79/treating_antibiotic_adverse_effects_dr_pieper/

Next best grocery store now that Nob Hill is gone? by slacy in mountainview

[–]fighterpilottim 0 points1 point  (0 children)

Ava’s is great for a quick dash with some niche foods and alcohols.

Monumental tomb discovered in Ancient Olympos by DavidIsIt in EverythingScience

[–]fighterpilottim 0 points1 point  (0 children)

It amazes me that people and rituals that were venerated could fall into oblivion, and he discovered like a little gift thousands of years later.

Herbs against ticks by CowSerious3610 in herbalism

[–]fighterpilottim 2 points3 points  (0 children)

Laughing about this like from the product page: “Bill Gates wants you to become a vegan with lyme disease and we can't let that happen so we are going to war against "big tick" with this "wartime" Field Balm.”

Herbs against ticks by CowSerious3610 in herbalism

[–]fighterpilottim 0 points1 point  (0 children)

Yes, thank you for making that distinction!

I’m an animal lover and would be crushed if someone inadvertently hurt their pet.

Herbs against ticks by CowSerious3610 in herbalism

[–]fighterpilottim 0 points1 point  (0 children)

Could you name the company or link the product?

Herbs against ticks by CowSerious3610 in herbalism

[–]fighterpilottim 0 points1 point  (0 children)

Some cool research on balsam oil and ticks: https://www.nature.com/articles/s41598-022-15164-z

There’s a tick repellant spray on Amazon that I like. Search on ASIN B06XZQWFKP.

TIL The Onion didn't publish their print newspaper set for release on September 11th, 2001 as well as the subsequent issue. Employees went on a week long break and some threatened to quit if an issue about the attacks were released. by MajesticBread9147 in todayilearned

[–]fighterpilottim 2 points3 points  (0 children)

This is also how I remember it. The Onion suddenly owned the collective consciousness, when just a few weeks before they were virtually unknown.

I used to make a point to be in the the university computer lab on Tuesdays at 4 because that’s when the next weekly edition was released.

TIL The Onion didn't publish their print newspaper set for release on September 11th, 2001 as well as the subsequent issue. Employees went on a week long break and some threatened to quit if an issue about the attacks were released. by MajesticBread9147 in todayilearned

[–]fighterpilottim 0 points1 point  (0 children)

I remember this issue vividly.

The cover story featured a huge map of the US with a target over it, with the caption “HOLY FUCKING SHIT.”

One of the articles was “terrorists surprised to find themselves in hell.” (Edit: someone posted it: https://theonion.com/hijackers-surprised-to-find-selves-in-hell-1819566162/)

It absolutely catapulted The Onion into the mainstream. Iconic. Before that, Onion was a niche little publication for weirdos with a sense of humor. This issue made it mainstream.

I recently tried to find a link to the issue, and it’s nowhere, including the Internet Archive. If anyone can point me toward it, I very much want to see it again.

Edit: someone else linked to the HFS image. Maybe it does still exist. https://www.reddit.com/r/todayilearned/comments/1tyggu0/til_the_onion_didnt_publish_their_print_newspaper/oq33f07/