British Medical Association article: Long Covid - we've been here before, 2021, J. Trueland

[MEMarge]

I recently read somewhere that someone (possibly the WHO?) when discussing long covid / PVFS using the 3 Rs argument. Rest, rehab, recovery.

Where's convalesence in the 3 Rs? Forget the sound bites. When something doesn't work or we don't know what we're doing then you go back to basics & what you really do know helped. Getting people to convalesce didn't cause panic, stress and undue worry in the 40s & 50s so why should it today?

Maybe rest is their version of convalescence, to fit in with their soundbite?

 

[Andy]

my memory is rubbish, but weren't F and M looking at something like this at some point - or some researchers. Sorry to be so vague! I thought nitric oxide might be involved, as a vasodilator. It also ties in with the micro capillary work being done by the Open Medicine Foundation (though this has been inconclusive to date).

There was this paper from last year, Peripheral endothelial dysfunction in myalgic encephalomyelitis/chronic fatigue syndrome, 2020, Scherbakov et al

and back in 2011 there is this paywalled article, https://www.internationaljournalofcardiology.com/article/S0167-5273(11)01904-8/fulltext,
Large and small artery endothelial dysfunction in chronic fatigue syndrome

There is accumulating evidence that myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is associated with cardiovascular symptoms including autonomic dysfunction [1], impaired blood pressure regulation [2] and loss of beat-to-beat heart rate control [3
]. A number of recent studies reporting raised levels of oxidative stress [4], low-grade inflammation [5] and increased arterial stiffness contribute to a picture of increased cardiovascular risk in ME/CFS. One potential site of oxidative injury is the vascular endothelium, and such damage would be expected to lead to endothelial cell dysfunction and diminished vasodilator capacity. The primary aim of the current study was to investigate large-vessel endothelial function in ME/CFS using flow-mediated dilatation (FMD), and to assess microvascular endothelial function using post-occlusive reactive hyperaemia, both of which have been shown to be related to cardiovascular risk and outcome

There are a number of other earlier papers but my Google skills don't reveal anything more current.

 

[Invisible Woman]

Maybe rest is their version of convalescence, to fit in with their soundbite?

I doubt it. Very happy to be proven wrong but as far as I can tell rest means rest in the initial stage of illness and, maybe, for a minimum period after. We're talking very short term measured in weeks.

Once they believe the illness has passed then it's time for rehab.

Convalescence implies a much longer post illness recovery period.

As an aside I also find it interesting that while it seems to be accepted that some issues, like a broken leg, take time to heal, that even relatively short term mental health problems take time to resolve, when it comes to viral illnesses after a few weeks you should be fine. I wonder did that start with ME or CFS? Or was this happening anyway?

 

[Robert 1973]

 

[Simbindi]

Not sure if this written interview with David Strain has been linked here:

https://www.dw.com/en/long-covid-symptoms-treatment-support-effects/a-56220741

When you're looking at the hard-hit, it's no surprise at all. If you look at people who've been on ITU [intensive treatment unit] for other reasons, many of those will still have long-term effects, six or even 12 months later. I think what's more interesting in long COVID is a number of people that only got relatively mild disease.

I mean, for me personally, I only had one day that I needed any additional therapy. Yet I've been left with symptoms 12 weeks later that are actually worse than the initial disease. And these are the ones that are causing more issues.

 

[Robert 1973]

I’m wondered if this might be the case. Thanks to Dr Strain for admitting he misspoke and apologising. I’ve asked him if he will contact the BBC to correct the record.

 

[Invisible Woman]

The on air mistake was a pity but I admire & think the better of him for being prepared to publicly set the record straight.

Whatever their field, someone who is prepared to step up and say, I got that wrong / i made a mistake is far more trustworthy and, in my opinion, professional than someone who just constantly makes claims that they were misunderstood without publicly issuing an unambiguous statement correcting the record.

 

[MarcNotMark]

my memory is rubbish, but weren't F and M looking at something like this at some point - or some researchers. Sorry to be so vague! I thought nitric oxide might be involved, as a vasodilator. It also ties in with the micro capillary work being done by the Open Medicine Foundation (though this has been inconclusive to date).

Well, there's this from Fluge and Mella (2014), using L-Arginine and L-Citrulline to increase NO. Not sure what became of this.

[0020] In particular, the present inventors recognized that an immediate relief after administration of an NO donor can be observed. In contrast to medication administered so far for treatment of CFS, which are characterized by a remarkable lag time of treatment success, as described for example for the treatment with Rituximab or Methotrexate, see e.g. WO 2009/083602. Thus, the administration of a NO donor surprisingly allow a treatment of CFS patients for immediate relief of symptoms without any delay as described for e.g. a B-cell depleting agent, like Rituximab, before. An alternative strategy was applied, using supplement with relatively high doses of L-Arginine 5 g twice daily combined with L-Citrulline 200 mg twice daily. L-Arginine is the sole substrate of Nitric Oxide Synthases (NOS), thus this approach aims to overcome the dysregulated nitric oxide system in CFS/ME patients by providing relatively high doses of the substrate.

https://data.epo.org/publication-server/pdf-document?pn=2805730&ki=A1&cc=EP&pd=20141126

 

[Wonko]

Tried them a couple of years ago - after reading the above research.

They may have helped me, a bit, for a while (months).

I was also doing keto (ish) at the time so the effects of individual things are probably muddied.

I am not currently using them, despite still have significant amounts of both.

Within days of starting them my decades long high BP dropped into normal range - this may be coincidental, but I doubt it as my high BP had been resistant to every drug the NHS had thrown at it.

So, people with low BP 'may' be advised to use caution with these supplements.

 

[JemPD]

From Dr Strain's tweet linked above

I know. I’ve watched it back. I feel like such an idiot. The only thing I can say is how sorry I am, and will try to do better for people living with CFS & ME

Dr Strain, if you ever come on here & read this, i just want to say how much i respect and admire you for this comment. It's so easily done to slip, with the pressure of being on air etc, & instead of attacking us & acting like an arse (which is what we usually get), you just hold your hands up. Awesome. It makes me trust you a bit.

all the best to you and thank you for both your honesty and your support, i wish you well

 

[Invisible Woman]

Just wondering if anyone who tweets fancies responding to Dr Strain and telling him the interview and his comments after have been discussed on here and we're grateful to him for putting the record straight. Maybe he'd like to pop in to the forum and have a look?