News about Long Covid including its relationship to ME/CFS 2020 to 2021

[Hoopoe]

Maybe ME has such a bad reputation in the UK that with LC you under no circumstances want to be associated with it. Even when you sit in the same sinking boat.

What they are doing is reinforcing stigma rather than dismantling it. If they can't deal with this constructively then they shouldn't be advocates. The policy of avoiding any association with ME/CFS could plausibly harm the LC patients with ME/CFS-like illness and the ME/CFS community. It also makes no sense from a scientific point of view to exclude observations of similarity to other diseases.

It's rather evident that LC (as group of illnesses) overlaps with ME/CFS (as group of illnesses). What message does it send when there is a policy of not acknowledging this? That some illnesses are just not deserving of the same respect as others.

 

[Wyva]

The ME denying long covid advocates all seem to be from the UK. What is it with the UK and hatred towards ME? And after disrespecting ME patients, these people manage to feel like the victims too and complain about being unpopular.

I haven't seen this behaviour in American or Italian or German LC advocates who generally seem kind and curious and don't have a problem acknowledging any similarities to ME/CFS.

I can kind of agree with this. I know that we are not allowed to talk about what is going on in other groups, so feel free to moderate me if this is too much but: my impression here in Hungary is that the only people against the association with ME/CFS are the ones who either don't have LC themselves (eg the admin of one of the groups), or some of those who recovered after 3-4 months and now keep telling others this is not really so serious after all but this means a very very small number of people altogether. My impression is that many people here are happy to see that now they at least have some information that what they have is real, especially that several of them (I have no idea about the exact numbers) already have the G9330 diagnosis, which is the PVFS/ME/CFS code, but they didn't really know what that meant. My general impression is that they appreciate any kind of information on LC.

 

[Kalliope]

Fibromyalgia, chronic fatigue syndrome, and Long COVID: How patients push medical communities to recognise and treat their diseases

https://rtd.rt.com/stories/fibromyalgia-long-covid-activists-push-for-new-diseases/

I liked the article. But their webpage looked a bit weird for a news station and on their twitter bio it's flagged that they're "Russia state-affiliated media". Just thought I'd share that.

 

[Mij]

This part, describing Long Covid symptoms, will sound familiar to many ME/CFS patients:

NINDS - Director's Message said:
A surprising number of these symptoms are neurological in nature, including pain, headaches, fatigue, postural orthostatic tachycardia, sleep disorders, post exertional malaise, and cognitive problems, such as difficulty with memory and concentration. Some individuals have reported that they are unable to work or engage in their normal, daily activities.

My big issue is comparing ME/PEM with LC when we don't have biomarkers to prove that this is occurring after exertion. I've experienced PVFS for many months and it is not the same thing, similar in some ways, but not the same. Many on social media and now Director's of NINDS are using the term PEM and it's irresponsible.

 

[Mij]

I haven't seen this behaviour in American or Italian or German LC advocates who generally seem kind and curious and don't have a problem acknowledging any similarities to ME/CFS.

This is true. I watched a news bit a few months ago where a LC patient was thankful that she had access to an ME/CFS clinic in Vancouver where she could be tested by various 'specialists' in one place. Not sure about treatment options though.

 

[Trish]

My big issue is comparing ME/PEM with LC when we don't have biomarkers to prove that this is occurring after exertion. I've experienced PVFS for many months and it is not the same thing, similar in some ways, but not the same. Many on social media and now Director's of NINDS are using the term PEM and it's irresponsible.

I think part of the problem is that the term PEM has not been clearly defined even for ME/CFS. That was clear from the recent NIH PEM study where they called what I would call 'fatiguability' 'daily PEM'. Even the diagnostic criteria mostly describe PEM as a worsening of symptoms after activity, I think.

Many of us here reserve the term PEM for what is colloquially called a crash, ie a, usually delayed, significant worsening of symptoms accompanied by a significant reduction in function lasting days or longer.

I have seen Long Covid people describing being crashed out in bed with lots of symptoms flaring up for days after trying to do a bit more activity. I would equate that with PEM. On the other hand if they are describing some aching or increased fatigue or breathlessness after activity, that would not be what I would call PEM.

I would not try to judge or diagnose whether people with PVFS may temporarily have bouts of PEM before recovering after some months. We simply don't know.

 

[Mij]

Many of us here reserve the term PEM for what is colloquially called a crash, ie a, usually delayed, significant worsening of symptoms accompanied by a significant reduction in function lasting days or longer.

I have seen Long Covid people describing being crashed out in bed with lots of symptoms flaring up for days after trying to do a bit more activity. I would equate that with PEM. On the other hand if they are describing some aching or increased fatigue or breathlessness after activity, that would not be what I would call PEM.

We all have our own way of describing how we feel during PEM. I've never described PEM as a "crash", but more of a frightening experience that worsens every time I have PEM. I don't consider my symptoms as a 'flare', but something quite unexplainable, including gait issues, dehydration, shakiness, unable to process information, chest pressure and an over all feeling of distress. The autonomic issues that developed years later made it much worse.

The delayed experience is very bizarre, and the manner in which it starts to manifest. I can feel completely ok, and the next minute it begins to creep up.

 

[Sly Saint]

Some Long-COVID Cases Have Met ME/CFS Diagnosis, But That May Solve Nothing

The sad thing is how shockingly little we know about myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS).

https://shinjieyong.medium.com/some...nosis-but-that-may-solve-nothing-1f05d08d9847

 

[Wyva]

Btw, this is totally anecdotal, but I thought I'd share anyway. Some people with LC in my ME/CFS group say their symptoms started 3-4-5 months after the infection. I have posted a poll about gradual vs sudden onset and the voters were a mix of original ME/CFS patients and covid long haulers. I was very specific about gradual onset meaning months or even years, yet a surprising number of people with LC chose that option. Again, this is just anecdotal but until we know more, it may be an interesting piece of information.

 

[Mij]

Some people with LC in my ME/CFS group say their symptoms started 3-4-5 months after the infection.

Some LC were reinfected with COVID months later so there's that too.

 

[Wyva]

Some LC were reinfected with COVID months later so there's that too.

Good point.

 

[Adam pwme]

 

[Leila]

Our Ministry of Health has put Out this little clip on LC.

Good thing is, they usw the patient led term (somewhat acknowledging their lived experience, I guess?).

Bad thing is, it's supposedly last "for a couple of weeks".

No mentioning of pacing, further investigation of organ damage etc.

 

[MEMarge]

Mention of Long Covid and ME brief but good.

Basically saying people with ME have been neglected. Long Covid hs shown that a virus can lead to long-term illness, so hopefully LC research will help PwME

 

[Dolphin]

FWIW:

 

[Dolphin]

FWIW:

Just found this which she said earlier

 

[Sphyrna]

Wow, thanks Nisreen, that really means a lot to me.
So, Long COVID is an umbrella term encompassing organ damages and "ME-like" symptomology (among some other things, like PICS, I guess), and there is quite a lot of room for different combinations of the two. Now, unless someone shows that these organ damages are causal for the "ME-like" symptomology (unlikely, considering that it occurs in quite mild cases), I cannot see the point of abstaining from ME terminology, should the diagnostic criteria be fulfilled. It could lead to better discriminatory power for all the different possibilities, with development of ME/CFS just being one of them, instead of having this nonspecific grab bag. We have already done the work demarcating a construct that describes these types of postviral sequelae quite well, and I do not get why COVID should be any more special than EBV, or what-have-you in this regard. No one is saying that ME is sufficient to replace the whole LC construct, only to put a name on a subset of it that cannot be explained by more tangible organ damages. You could have ME and post-COVID organ damages at once without it being related, but I am afraid that research will simply conflate the two, unless you clarify that there need not be *any* overlap. The latter is obviously lower hanging fruit and thus more amenable for research, which is why forays into the pathology of the nonspecific symptoms should be actively encouraged, yet no one is doing this? Hell, you could even piggyback off the research that has already proven fruitful in ME, such as exercise physiology. But ME was barely even mentioned in this new LC WHO policy brief.

https://apps.who.int/iris/bitstream/handle/10665/339629/Policy-brief-39-1997-8073-eng.pdf

I'm sorry. I just don't understand.

 

[chrisb]

I wonder why she thinks it necessary to say these things "loud and clear". Does she think we are recalcitrant children or imbeciles? It is a very strange and unpersuasive way to address a potentially hostile audience. The odd thing is that she appears to be making similar points to what we made at the outset. Perhaps we were neither loud, nor clear, enough.

 

[Tia]

I wonder why she thinks it necessary to say these things "loud and clear". Does she think we are recalcitrant children or imbeciles? It is a very strange and unpersuasive way to address a potentially hostile audience. The odd thing is that she appears to be making similar points to what we made at the outset. Perhaps we were neither loud, nor clear, enough.

I guess she's trying to be really clear? I didn't read it as patronising or insulting.

Personally, I don't have a problem with what she's saying. She clearly didn't quite understand ME/CFS at the beginning but perhaps we can assume that she has a better understanding now?

I agree with her that LC research will benefit us and I'm glad she's doing so much to advocate for LC research. I also can see why it might not be useful to lump LC and ME together at this stage (although I think it is definitely important for LC advocates to learn from ME advocates).

 

[Hutan]

Just found this which she said earlier

Nobody’s saying post viral fatigue after covid is new compared to other viruses. What we’re saying is that there’s more than PVF in many with #LongCovid including specific organ damage which requires proper diagnosis & treatment. If you label them with PVF that won’t be picked up

That makes as much sense as deciding someone who has been in a car crash and now has a damaged spleen and a broken leg can only ever be labelled as 'car crash victim with broken leg', because saying that they have 'damaged spleen' as well would prevent the broken leg being identified.

And that makes no sense at all, unless you think that a label of 'damaged spleen' (or, in this case PVF (or ME/CFS)) consigns people to a medical wasteland where any signs and symptoms are not evaluated properly, and the only treatment is CBT and GET.