Jonathan Edwards
Senior Member (Voting Rights)
A drop in neutrophil count isn't really immune suppression as normally understood. ME/CFS is not going to be due to an overactive neutrophil response.
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Upadacitinib (rinvoq)--could it reduce fatigue in ME/CFS?
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A drop in neutrophil count isn't really immune suppression as normally understood. ME/CFS is not going to be due to an overactive neutrophil response.
Jonathan Edwards
Senior Member (Voting Rights)
Not a lot from that account. It is written in typical fashionable immune-soundbites without any actual data given. They have presumably found some differences in markers that have been labelled 'markers of T cell exhaustion'. My experience of working out disease mechanisms sufficiently to devise new treatments is that you need to throw this sort of popular jargon in the bin and stick to specific findings and interpret them in terms of specific mechanisms. It is a bit like the old idea of 'loss of tolerance' - it is too vague to be useful.
Im not completely sure of that
I’ve had to have a lot of blood tests for other things. I don’t unless I’m just not offered it think my area has anything free that does phlebotomy as I’ve asked directly and been pointed to private mobile options. Before that it was having to schlep to hospital as the local chemist options left me in pain due to often not having fine needles and not being told before you are thee.
basically I had to be really on a good day ie have rested to get it done
even when I have mobile I won’t book it in if I’m having a bad week but after due to the phone conversation and admin etc
in the past I assumed it was also the case that if it wasn’t on the sheet it wouldn’t get tested and even if it was then it wouldn’t get flagged . No one is putting me down for anything me/cfs related - I doubt they would for anyone else due to the old guidelines
but when I’ve had tests covering inflammation they came back high yet of course they were fir those other injuries
what I’ve never seen is any method really even taking such tests in us when we are definitely rested (which we need to be mobile and be a ‘call when it happens’ because yes I’m in PEM more than I’m out of it and who knows when it actually ends) and then tests in days eg after I’ve had to do something that’s exerted like a big travel appt where (if it’s fine needle just small amounts of blood and come to me in bed somehow without me opening the door, I can’t even set an alarm to be awake reliably in that situation my body will sleep thru it) it could be taken in the days after to see that’s anything that does show PEM and does vary in the days post exertion
Arfmeister
Established Member (Voting Rights)
1) I think it’s more subtle. There is continuous PEM but within that you have different Grades of (worse and less) PEM
– and than you can get big PEM crashes within the PEM
If am go off my own experience and other severe ME I know
2) I agree. As far as I know, there is not real good research measured at various time points. Including cytokine profile
– specially, including the very severe, as they cannot come to any clinic
- so they’re often excluded, although maybe the most interesting group research wise
So I hope someday they will Conduct a serious longitudinal study on ME/CFS patients to gather extensive data - before/after Exertion (PEM)
1) Participants: 100 ME/CFS patients
- 25 or 50% severe
– from which 10% very severe
2) Study Duration: 4 months
3) Data Collection Methods:
- Heart rate monitor data 24/7 (e.g.Fitbit, Garmin)
- Collection of urine, blood, and saliva samples
- Optional: Biopsies, Stool samples
- To be decided: exact markers
4) Data collection points
- at least 20 time-points
- Specifically when baseline changes e.g. PEM-crash
- for Mild/moderate the exertion can be induced
5) How will Samples be collected:
- for Mild/moderate can be collected at laboratory / by MD
- Very Severe = Having a local nurse visiting to collect data
- NB: Hopefully in the future, we can sample our blood ourselves
- As this will be the most expensive and complicated part
6) Outcome:
- Accumulation of a vast number of longitudinal data points
- for in-depth analysis (use of AI, etc)
PS: inspired by a comment from dr. Renz Polster
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Yes and my point was that the same would be needed for severe and potentially moderate we need to be realising that any blood taken is unlikely to be people who aren’t over exerted - I was working full time and had little Lee way from anyone having to get myself to any appointments or tests myself on top of that work
So I’m not sure when we assume things would have been picked up on already …
that is actually the case - apart from a few very fortunate they are not going to be able to have got to the location to have tests done when they are too ill ie in PEM , even if we had sheets for something else we had we couldn’t have travelled and sat whilst in PEM so no I don’t think there would be incidental results
I think we have to remember the nature of me/cfs meaning we have those ‘better days’ combined with the incitement/bigotry from bps and everyone being told to believe it’s just fatigue as a perceptual anchor we can’t communicate through means unlike most other conditions I think we get left abandoned on EVERY level as the norm by those around us. We don’t get partners or friends helping us or the district nurse being sent because they are all told to leave us to manage
so unless someone starts doing at home tests then they aren’t getting anyone’s blood tests in PEM
we often can’t sit up
so I’m not sure there is that usual ‘there would have been red flags just by coincidence by now’ that appeared in peoples tests. Because if it’s something that only raises in PEM then we will also need to get our head round realising culture has made it such then next to no one will ever have had blood taken in PEM due to it having deliberately been made impossible. Heck even in hospital pwme are not only thrown out when more ill than with other illnesses but they avoided tests that would be standard particularly as people also have other illnesses based on the awful bps nonsense of ‘if you’ve labelled someone with one functional condition then whatever they present with on top that’s also caused by the mind’.
So the medical profession has been told to avoid ever giving us any tests even what people would think ‘everyone has’. And on top of that if it comes back as abnormal they were taught to ignore it and attribute it to ‘the mind’ too or certainly not to flag it anywhere else because if their careers and the culture of ‘don’t investigate me/cfs’.
I think literally no normal processes can be assumed as ‘it would have come up’ because we’ve been under a huge cultural pressuring for all of those normal things both not to happen and not to be reported for over a decade.
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Arfmeister
Established Member (Voting Rights)
I guess/presume her baseline changed over the years (months)
According to Healthy Rising article she was 90% bedbound before treatment started.
See this paragraph:
PS I have kids.
Raising kids can happen in very different ways, depending on your severity.
But Yeah, at some point, she was well enough to get pregnant and labor.
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Arfmeister
Established Member (Voting Rights)
Cross posting from Phoenix Rising Post:
Survey Self-reported anecdotes different JAK-inhibitors
n= 35 - ME patients (incl Long Covid with PEM)
Together with another patient, I took this survey and added all the anecdotes we could find online
(if possible asking for additional information thru DM, etc)
*Inclusion criteria:
- PEM one of the core symptoms
- 2nd hand anecdotes w/out dosing info + duration info excluded
- Trials < 1 month - with nó improvement - excluded (too short treatment duration)
Remarks:
A) Relative high amount patients with autoimmune comorbidities - they have easier access to JAK-inhibitors
- so improvements in fatigue can have confounders
B) Not aware of any self-reported permanent worsening ME symptoms after trial
C) Some patients did STOP JAK-inh despite improvement because of side effects or adverse event
E.g. liver issues, elevated creatinine, gut inflammation, low tolerance medicine in general, infection, Low white blood cells, etc
- Filgotinib might have least side effects (?)
D) Most patients took for > 4 months
- Part of patients stopped protocol because of financial reason (no prescription, no insurance coverage)
E) Some of the anecdotes & results were reported / confirmed by an ME-specialist
Disclaimers :
1) results might be too ‘optimistic’ - because of:
- positive bias - easier to find self-reporting positive anecdotes (?)
- negative experiences less likely to respond (?)
- Inclusion Mild ME + short duration LC might skew results
2) ‘Low-quality’ survey : meaning n=35 data collected online (when possible with direct contact for details)
3) JAK-inhibitors are strong immune suppressors/modulators with side effects - should be monitored with lab blood panels, etc. - under surveillance of a doctor
Survey Self-reported anecdotes different JAK-inhibitors
n= 35 - ME patients (incl Long Covid with PEM)
Together with another patient, I took this survey and added all the anecdotes we could find online
(if possible asking for additional information thru DM, etc)
- 49% had significant improvement (= more than 10%)
- 20% did not benefit at all *
*Inclusion criteria:
- PEM one of the core symptoms
- 2nd hand anecdotes w/out dosing info + duration info excluded
- Trials < 1 month - with nó improvement - excluded (too short treatment duration)
Remarks:
A) Relative high amount patients with autoimmune comorbidities - they have easier access to JAK-inhibitors
- so improvements in fatigue can have confounders
B) Not aware of any self-reported permanent worsening ME symptoms after trial
C) Some patients did STOP JAK-inh despite improvement because of side effects or adverse event
E.g. liver issues, elevated creatinine, gut inflammation, low tolerance medicine in general, infection, Low white blood cells, etc
- Filgotinib might have least side effects (?)
D) Most patients took for > 4 months
- Part of patients stopped protocol because of financial reason (no prescription, no insurance coverage)
E) Some of the anecdotes & results were reported / confirmed by an ME-specialist
Disclaimers :
1) results might be too ‘optimistic’ - because of:
- positive bias - easier to find self-reporting positive anecdotes (?)
- negative experiences less likely to respond (?)
- Inclusion Mild ME + short duration LC might skew results
2) ‘Low-quality’ survey : meaning n=35 data collected online (when possible with direct contact for details)
3) JAK-inhibitors are strong immune suppressors/modulators with side effects - should be monitored with lab blood panels, etc. - under surveillance of a doctor
Jonathan Edwards
Senior Member (Voting Rights)
Yup.
SunnyK
Senior Member (Voting Rights)
Caveat: I am not a scientist and this is just a one-person anecdote I will say that I have had juvenile onset rheumatoid arthritis-- yes I know that it is called juvenile idiopathic arthritis now but I've been calling it JRA since 19 76 so...-- and once c-reactive protein tests became available as an inflammatory marker reading, mine have been fairly low or normal because my JRA/ jia is pretty much in remission. However, seeing a new rheumatologist last June who did a more complete inflammatory panel called a vectra test seem to show that at least one of my inflammatory markers or cytokine markers was elevated. So I was switched from Enbrel, which I'd started taking nearly as soon as biologics became available, to Rinvoq. By this time my ME had gotten severe, and the Rinvoq has not changed my symptoms or level of severity at all, but it has brought all of my cytokine markers down to normal levels.
This may or may not be relevant, but I just thought that since I have both conditions and have been taking the drug for 6 months now, I would share my experience.
This may or may not be relevant, but I just thought that since I have both conditions and have been taking the drug for 6 months now, I would share my experience.
Arfmeister
Established Member (Voting Rights)
That’s unfortunate. But maybe after 6 months something might happen.
Hopefully lower cytokinin markers might lead to something for you.
What dosage are you taking?
Any side effects?
SunnyK
Senior Member (Voting Rights)
This is interesting to me. Again, I'm going by a statistical sample of one-- me-- but I have found the few times in the last 15 years that I have felt improved were the times I needed to do a boost and taper of steroids to control an acute RA inflammation. But I don't know if I was getting anti-inflammatory effects from the steroids that was helping my me/cfs, or if the steroids were giving me energy because I am also adrenally suppressed since I've been on steroids continuously since I was 9 years old, so nearly 37 years.
SunnyK
Senior Member (Voting Rights)
Thank you for sharing that. I certainly won't be going off the Rinvoq since it has my ra under control, but I don't know if I will be raising the dose from my current 15 mg per day. I am not experiencing any side effects from it, thankfully.
Jonathan Edwards
Senior Member (Voting Rights)
The further problem is that steroids impact on the brain through non-inflammatory pathways too, and induce euphoria, maybe 'energy', even in normal people.