What do ME patients risk when catching the common cold etc?

[ChookityPop]

I read this quote from Dr. Lerner "Any new infection (such as the common cold or bronchitis, or sinusitis, or a urinary tract infection) will worsen the symptoms of CFS. These common infections must be treated vigorously."
https://www.healthrising.org/forums...ibromyalgia-antiviral-treatment-protocol.134/

Its obviously not the first time I have heard about this. Do some of you experience lasting worsening of your symptoms from catching these things? How common is it to get permanent worsening from these?

I have also read about patients getting better and even remission after catching the flu.

Interested in hearing your experiences.

 

[nerd]

When I catch a common cold, it feels like Influenza. It lasts longer and sometimes involves reactive arthritis, but that's just a genetic issue.

 

[Wishful]

I object to his use of the word "will". New infections might significantly worsen ME symptoms in some victims, but I doubt that it applies to all PWME. I've only had a few viral infections since developing ME, and they made my ME symptoms worse for a day or two, but that's all. Is it possible to develop long-term worsening of ME from an infection? Probably. Is it possible that an infection might provide long-term reduction in ME symptoms? Probably, and probably at a similar tiny probability. Should a PWME worry excessively about possible infections? I think they're more likely to develop problem from excessive worry. As far as I know, there's no way to know in advance how a particular PWME will react to infections or any other factors. If someone does develop a very bad reaction to a viral infection--or anything else--they should then make plans to minimize such occurrences in the future.

Dr. Lerner's recommendations also say: "Exercise must be avoided," Again I object to the use of "must", since that does not apply to all PWME. If exercise makes you feel worse, avoid it. If it doesn't, it's probably better for your overall health if you continue. I expect I'd be in a lot worse state of health now if I avoided my daily 45 minute walks and all the other even strenuous activities that I've continued doing for many years.

I'm not impressed with his web page (or him). He sounds like someone who has a narrow vision of what ME is and what a typical PWME is, and is blind to any variance from that.

 

[nerd]

He sounds like someone who has a narrow vision of what ME is and what a typical PWME is

Aren't we all? I think we want to believe in certain theories because it gives us hope in one way or another. But it doesn't mean that everyone with strong believes categorically excludes other theories.

 

[Wishful]

But it doesn't mean that everyone with strong believes categorically excludes other theories.

No, but his choice of words, to me at least, implies that he doesn't consider other possibilities. I feel that he sounds closed-minded. If I was doling out research funding, sounding closed-minded would be a mark against him. The opposite extreme, sounding like having no confidence in any hypothesis, would be just as bad.

 

[BrightCandle]

I don't really catch colds, even covid just rolled off me as nothing, has been that way for nearly a decade. However I suffered long covid severely and its left me permanently worse. I have no idea if that fits this idea or not because the actual colds haven't caused issues generally but I also suffer long covid symptoms with worsened ME from covid.

 

[DrUniverse]

Damn i got a urinary tract infection and cant get rid of it, cfs got definitly worse. Immune System has to split its capacity.

 

[Treeman]

If I catch cold they are worse and longer than most of the same infection, I usually do make a full recovery.

However I did catch at least two colds that lead me from being mild to moderate and having to give up working 4 years ago.

Dr Learner has now passed on and his comments came from what some may consider a less informed and up to date understanding of the more wider issues involved in ME/CFS supported by more understanding on what may cause and may help pwME. I just know he did help many and me a little too.

 

[ljimbo423]

Its obviously not the first time I have heard about this. Do some of you experience lasting worsening of your symptoms from catching these things? How common is it to get permanent worsening from these?

I haven't had a cold or a flu in 10-15 years, or longer. I did catch Covid twice since this pandemic started. Both times it was mild and I haven't had any lasting worsening of my ME/CFS symptoms from it.

Reading these posts, it seems that people's responses to getting infections very a lot from person to person. Wheather they often get infections, how bad they are, or if they get a lasting worsening of their ME/CFS symptoms from them.

 

[Rufous McKinney]

wheather they often get infections, how bad they are, or if they get a lasting worsening of their ME/CFS symptoms from them.

for years with mild ME, I got very very sick from colds and flus.

Now with moderately awful ME, I rarely catch things, but I don't go out much so exposures are way way down.

What I do get is like a stomach flu but isn't. I blamed it for getting much worse ME, and I"ll never really figure it out, what happened? Two bouts, 2 months apart, ER and I have the ME much much worse.

During any other illness event, the ME symptoms blow up and are nearly impossible to tolerate. My tongue won't fit inside my mouth, for instance. Not fun. The pain.

 

[Reading_Steiner]

If I catch any viruses, the effects are minor, I never have any running nose or obvious cold symptoms, bacteria infections seem to be harder to shift though, I had a problem with my toe a few years back and then last year it was a sore throat infection. I haven't got anything resembling what they describe as 'covid 19' having passed thousands of people this year, I live in a town of maybe 20 or 30 thousand people, but i've been to cities a few times this year, and hospitals to try and get diagnosis of me/cfs. Even outside in the fields miles from anywhere I will still pass by people less than 5 metres away, its difficult to avoid unless you stay indoors on purpose.
Some people believe me/cfs might be a sort of anti-viral mode thats built into the human body but is not usually active.

 

[christiankatz]

I haven't had a cold or a flu in 10-15 years, or longer.

Oh, I hope I don't regret saying this, but I haven't had the cold or flu in 10-15 years either. But my nose rarely stops running.

 

[ljimbo423]

Oh, I hope I don't regret saying this, but I haven't had the cold or flu in 10-15 years either. But my nose rarely stops running.

Same here. I buy 4 boxes of tissues at a time now.

 

[Treeman]

https://forums.phoenixrising.me/threads/has-anyone-with-me-cfs-never-caught-a-cold-or-flu.80506/

 

[lenora]

@christiankatz & @Jimbo39 .......it sounds like you have allergies. My husband has the runny nose type and I have just the opposite, stuffed nose, resulting in sinusitis and then going into bronchial problems. When I have them (which is every year....at least once) I cough a lot and have ribs that come out of place.

Just different ways of allergies presenting themselves. Rod finds great help with Coricidin 'D' one of the earliest antihistamines. He's been a victim of horrid allergies for probably 56 years or so. Not too much available then. Now there is an OTC nasal spray that helps immensely....ask your druggist.

I now have year round allergies and they're worse each year. My biggest foe by far, especially when I need an antibiotic (and no, I dont' use them unless absolutely necessary).

One theory about not catching colds easily is that the older we become, the more of the cold viruses we've been exposed to and have already had.

To exercise (which I would like to do) 45 min/day indicates a pretty healthy person when one takes into account our scale of illness. To do more than that, is youth at its best....use it wisely and don't push those weights too hard.

I think I'm bound to catch something between my children, grandchildren and life in general. I just don't want COVID, the Delta strain or that horrid cold that is making the rounds. I'm gobbling up my vit. 'C'. Yours, Lenora.

 

[blueberry]

Shortly before Covid-19 make its appearance, I had actually made purchase of a mask- because I am one of the ME folk that catch every bug going and get really unwell with them. I was always catching bugs at work, and was having a lot of time off, so made the decision to try wearing a mask at work to see if that helped. I can't work anymore but have really enjoyed suffering far fewer viral type episodes since being a regular mask wearer!