Reddit - Interesting posts on Reddit, including what some doctors say about ME/CFS

[Trish]

Have often thought about that. I just can't imagine how much worse this whole thing would have been without the internet & without being able to access support & insight from other patients.

I got sick in 1989. I was diagnosed by a GP. She had no advice for me, and other GP's just said try to exercise more, and signed me off sick for a week or two when I was struggling with part time work. I was most helped by a couple of books that gave good advice on pacing and got the MEA magazine which had some decent articles by Charles Shepherd. I wasted money on alternative therapies but at least there were no clinics pushing GET.

About 10 years later my daughter went to a course of group OT sessions at the local clinic. They did diary keeping, find your baseline, pacing up. She found it a complete waste of time.

 

[rvallee]

Perversely, in some ways that may have actually been a modest positive, as we had to largely figure it out for ourselves, without the BPS club breathing down our neck.

I do think it's fair to say that things have regressed significantly since the days Wessely decided to target us. Things looked really bad back then, but they still look far worse today under the dominance of the biopsychosocial ideology, because it's an extremist ideology that always doubles down on its mistakes and has no ability to stop destroying lives. It's similar to how a state of anarchy can be preferable to a blood-thirsty tyrant. The tyrant does not let go of its power, whereas anarchy is a vacuum begging to be filled. Sadly it got filled with all the wrong ideas.

But at least as things got worse on the clinical and professional front, the community is much more useful than ever. And the modern world makes a lot of things easier. So things at home are slightly better, despite the worst efforts medicine put out, because of technological progress.

And that's even accounting for Long Covid. The needle has not swung back at all. It's getting jiggled in the right direction, but there is far more pull in the wrong direction and it probably made us worse overall. Until science does what it does and provide real answers. Which is basically like waiting for a sword-in-a-pond moment. How little things change, even when everything does. Humans are so freaking weird.

 

[MrMagoo]

One reason might be they're not getting a diagnosis. When I wasn't recovering from Covid and showing signs of (what I now know to be) ME/CFS, my Dr didn't give me a label. So I hadn't the slightest idea where to look for information*. She was perplexed and told me to increase exercise. Also I was in the fortunate position of having worked with Drs before and had relatives who had experienced medical misadventure, so I didn't have them on a pedestal as a profession.

I was struggling just feeding myself and doing daily activities, while barely managing to get through my job and holding on by my fingernails & her advice was to increase activities?! It was so obviously ludicrous advice combined with her psychologising / dismissing me, that I didn't take her seriously for 1 minute (while of course pretending to take her seriously because of the risks of not being a 'model' patient).

She should have advised me I was way too unwell to be trying to work and needed time off work. The option of just stopping work hadn't crossed my mind for obvious reasons and I was going to a Dr trying to get to the bottom of it so I could work and continue with my life... instead shocked to find all this gaslighting right at my most vulnerable moment. Her dismissal made me feel briefly suicidal. I was so incredibly ill and the one medical person you are supposed to go to for support was fobbing me off.

Luckily I unexpectedly happened to see another Dr who immediately said I was too unwell to be in work & signed me off. The illness got worse over time, I believe it was unfolding, new neurological symptoms began, there were episodes where I believe I came close to death. Would that have happened if I'd stopped work sooner, known about pacing?? I don't know but I suspect not. My sense is that an unfolding disease process was at play. But I am certain if I'd followed the Drs advice re exercise, I might not be around now, or very severely ill. I've no doubt about that.

*Will forever be extremely grateful for all the pwME back in 2020 who started sharing their experiences online with LC patients & advised re pacing / resting etc. as well as explaining the medical context.

Thank you. I was trying to share info back then and quite a few times it was not well received and I was told to pipe down! It was strange to see it play out. The rush to be vegan, take antihistamines, keto diets, supplements…people declaring it had made such a difference, a few weeks later feeling worse, then admitting it didn’t really help and they had ditched it.

 

[PageofME]

chronic tonsillitis

Thank you for your interesting experiences. My heart ached reading through paragraph after paragraph, understanding you and your partner becoming more and more severe and missing the right information sometimes only very narrowly. I am so sorry.

What came up for me: Are you sure you had chronic tonsillitis? Did a throat-nose-ear doctor confirm this? I'm asking because this might have already been ME. Interestingly enough you don't explain how the tonsillitis stopped and when you experienced your first ME episode.

I think that one of the biggest problems about the information on ME is that the beginning of the course of the illness isn't very accurately described. Only when you become a moderate your symptoms begin to look more like described with the CCC.

I was studying any kind of atypical herpes reactivation at that stage to no avail. It was very helpful for me though that my throat-nose-ear doctor confirmed that I didn't have tonsillitis. Even when she confirmed that my tonsils were swollen. But she said that that had an lymphatic cause.

I have heard many times that people think that they had chronic sinusitis before they developed ME. But also here I wonder whether their early ME was just misdiagnosed.

Personally I think that the flu-like symptoms that made me think that I had a viral infection and a sore throat rather than PEM should be described as the main symptoms of early ME.

 

[V.R.T.]

What came up for me: Are you sure you had chronic tonsillitis? Did a throat-nose-ear doctor confirm this? I'm asking because this might have been already ME. Interestingly enough you don't explain how the tonsillitis stopped and when you experienced your first ME episode.

After our bout of strep, both my partner and I developed chronic tonsillitis. Hers was much worse, with big white patches on her tonsils and within a year and a half they were in such a hideous state that doctors refused to perform an operation where she would need to be intubated until they were removed (due to either risk of obstruction or infection, i dont recall). They were in a grim state honestly. Recurrent Tonsillitis was confirmed by an ENT and she had a tonsillectomy.

Mine was more subtle at first, with bright red tonsils. Then small holes began to appear, and tonsiliths (very unpleasant!). Occasionally I would see white patches but when I went to the doctor they always seemed to miss it. Implied I was imagining it. Then the holes got worse, I developed big white patches and managed to take pictures. I found a private ENT who confirmed chronic tonsillitis and removed my tonsils. When he came into the room after the operation was visibly a little shaken he said my tonsils were 'nasty'.

I don't doubt that partner and I both already had ME/CFS while we were suffering from the tonsillitis. We began to feel unwell all the time after we both caught strep throat (and impetigo at the same time fwiw), and it was a year and a half before her tonsils were removed and another year before mine were.

 

[PageofME]

After our bout of strep, both my partner and I developed chronic tonsillitis. Hers was much worse, with big white patches on her tonsils and within a year and a half they were in such a hideous state that doctors refused to perform an operation where she would need to be intubated until they were removed (due to either risk of obstruction or infection, i dont recall). They were in a grim state honestly. Recurrent Tonsillitis was confirmed by an ENT and she had a tonsillectomy.

Mine was more subtle at first, with bright red tonsils. Then small holes began to appear, and tonsiliths (very unpleasant!). Occasionally I would see white patches but when I went to the doctor they always seemed to miss it. Implied I was imagining it. Then the holes got worse, I developed big white patches and managed to take pictures. I found a private ENT who confirmed chronic tonsillitis and removed my tonsils. When he came into the room after the operation was visibly a little shaken he said my tonsils were 'nasty'.

I don't doubt that partner and I both already had ME/CFS while we were suffering from the tonsillitis. We began to feel unwell all the time after we both caught strep throat (and impetigo at the same time fwiw), and it was a year and a half before her tonsils were removed and another year before mine were.

I am a bit shocked by your painful stories and don't know exactly what to say... – How tragic if you have ME but then already from the start superinfections become so serious and central in the picture of your illness that it is almost impossible to detect the ME/CFS beneath it. But what would be so important to understand why your immune system is failing you.

 

[V.R.T.]

I am a bit shocked by your painful stories and don't know exactly what to say... – How tragic if you have ME but then already from the start superinfections become so serious and central in the picture of your illness that it is almost impossible to detect the ME/CFS beneath it. But what would be so important to understand why your immune system is failing you.

No need to say anything, but thanks. I shared initially to show that there are myriad reasons why people might keep going back to the doctor, or not fully understand what is going on with them. Our story is particularly sad in that it happened to both of us but other than that I don't think it's all that unusual.

 

[ChronicallyOverIt]

After our bout of strep, both my partner and I developed chronic tonsillitis. Hers was much worse, with big white patches on her tonsils and within a year and a half they were in such a hideous state that doctors refused to perform an operation where she would need to be intubated until they were removed (due to either risk of obstruction or infection, i dont recall). They were in a grim state honestly. Recurrent Tonsillitis was confirmed by an ENT and she had a tonsillectomy.

Mine was more subtle at first, with bright red tonsils. Then small holes began to appear, and tonsiliths (very unpleasant!). Occasionally I would see white patches but when I went to the doctor they always seemed to miss it. Implied I was imagining it. Then the holes got worse, I developed big white patches and managed to take pictures. I found a private ENT who confirmed chronic tonsillitis and removed my tonsils. When he came into the room after the operation was visibly a little shaken he said my tonsils were 'nasty'.

I don't doubt that partner and I both already had ME/CFS while we were suffering from the tonsillitis. We began to feel unwell all the time after we both caught strep throat (and impetigo at the same time fwiw), and it was a year and a half before her tonsils were removed and another year before mine were.

I think we've talked about this before, but it’s always interesting how our stories are nearly identical. Strep infection that did not clear, sat with the infection for over a week, then month later led to ME/CFS, started with unrefreshing sleep. I got those white tonsils for my first 3 years, extremely debilitating at times, which would last months. I'm on year 5 of ME/CFS so either I've gotten more stable or that white tonsil reaction has passed. Swabbed with rapid strep many times when white, never came back as strep. Similar story with GP not believing (he prescribed anti fungals and lots of other arm wavy answers for months), but eventually I saw ENT but wait list for tonsil removal in Canada is extremely long so I'm still waiting. I test high on strep ASO titers but no clinical advice has ever been able to be drawn from this. I tried rounds of amoxiclav to no avail either. I believe the white tonsils were an immune response.

 

[MrMagoo]

The “caught a virus but didn’t get better” is really common and repeated everywhere. I certainly would have agreed.

But actually, I’d been getting “a virus” every other month for some time, and it was many years before I was introduced to the idea that for pwME maybe things were going wrong before that big event, they certainly were for me for a year or two.

And it was always put down to “change in weather” and “you always get sore throat” and “working and training at the gym” and “it’s hayfever season” or “pollution is high”…

 

[PageofME]

But actually, I’d been getting “a virus” every other month for some time

Do you think that you were already ME-ish flu-like with a sore throat and fatigue? Or did you know about the viruses causing these infections in a matter of fact way. Like you had confirmed respiratory infections like colds and the real flu?

 

[MrMagoo]

Do you think that you were already ME-ish flu-like with a sore throat and fatigue? Or did you know about the viruses causing these infections in a matter of fact way. Like you had confirmed respiratory infections like colds and the real flu?

I really don’t know. We don’t get tested for viruses like chest infections or flu. It was flu-like, sweating, sore throat, cough, fatigue but never really very serious, just a bad cold, a bug, maybe a day off work, maybe skip the gym that week.

I also developed hay fever and eczema during this period (the hand eczema was so bad and out of the blue that it was hard to type - my office sent me home to see the GP, it had just appeared overnight!).

Now, I can well believe there is a prodromal phase of ME and I was keeping going, up until I couldn’t.

We don’t know either way, but I think it’s an interesting hypothesis and would like to find out for sure (if we ever do in my lifetime).