Prof Julia Newton talk to medical & health professionals on autonomic dysfunction &fatigue in ME/CFS

[Dolphin]

(I haven't watched this myself)

From Action for ME:

We held a webinar hosted by Professor Julia Newton aimed at educating Scottish GPs on Tuesday evening, and you can now watch a recording of it on our YouTube page via the link below.

Funded by the Scottish Government, the presentation draws out practical guidance for General Practitioners, Practice Nurses and Allied Health Professionals based on Professor Julia Newton's recent research evidence, followed by a question and answer session for webinar participants.

Please feel free to share the video with your own GP if you would like to do so.

Comment: I think it is good that Julia Newton is involved in research - she is looking at the illness in lots of different ways, some that seem to me to be new to the field. However, I don't agree with everything she has said/written so her talks may be far from perfect.

 

[Leopardtail]

I think too that the talks are less than perfect, but then almost all of the are. This particular one ignored low blood volume as a possible OI cause *even though Fludrocortisone as discussed as a treatment) and treat OI as a distinct conditions from ME/CFS both notable failures.
Like dolphin though I love that Julia is not 'stuck in a rut' with her approach to ME.

 

[IreneF]

I think low blood volume is a consequence of whatever is causing the OI or POTS. It's something in the part of the nervous system that hasn't yet been pinpointed. One can treat some of the *symptoms* by salt-loading or with drugs but we can't cure it.

 

[Leopardtail]

I have seen search on ME indicating that if you use saline blood pressure returns to normal and OI stops happening, and does POTS, and the nervous system reverts to normal. I know that if you give me saline 90% of my ME symptoms revert to normal and my brain works like a charm. That gives me the hunch that ME causes a flaw the lowers blood volume and the lowering of blood volume causes the OI.
All of this is why I find the 'missing bit' of the research a nuisance. I would like to see experiments designed more comprehensively to give more definitive answers about cause and effect.

 

[taniaaust1]

I know that if you give me saline 90% of my ME symptoms revert to normal and my brain works like a charm. That gives me the hunch that ME causes a flaw the lowers blood volume and the lowering of blood volume causes the OI..

I too think the ME causes the low blood volume (and I dont think its just due to how much laying we do!) which in turn probably causes the POTS. In my case thou giving me saline fixes my POTS and my orthostatic BP issues for a short time (it helps for 1-2 days) but it doesnt fix my other ME stuff, it thou can ward off a next day ME crash, triggered from the day before POTS crash.

 

[IreneF]

I just pee out the extra fluid within a couple of hours. My kidneys must be overly efficient.

 

[Sasha]

Me too.

 

[xchocoholic]

I just pee out the extra fluid within a couple of hours. My kidneys must be overly efficient.

Me too. It's good that something's working efficiently. Tc . X

 

[SOC]

I just pee out the extra fluid within a couple of hours. My kidneys must be overly efficient.

That probably means your aldosterone is low. You might want to have it checked, if you haven't already. Florinef is a common treatment for that.

As I understand it, if your aldosterone is low your kidneys will take too much water out of your blood. You can drink a lot, but your kidneys just keep taking the extra fluid out, so all you do is drink and pee a lot without increasing your blood volume.

 

[IreneF]

That probably means your aldosterone is low. You might want to have it checked, if you haven't already. Florinef is a common treatment for that.

As I understand it, if your aldosterone is low your kidneys will take too much water out of your blood. You can drink a lot, but your kidneys just keep taking the extra fluid out, so all you do is drink and pee a lot without increasing your blood volume.

I used to take florinef but it didn't do too much. Basically my disease kept progressing no matter what I did. Possibly if I had seen a doc who told me to go to bed and stay there for six months some of this could have been averted. Who knows?

 

[Leopardtail]

I just pee out the extra fluid within a couple of hours. My kidneys must be overly efficient.

Mine do too, the effect is temporary, more so if I only drink water rather than have it infused.

My feeling is our bodies are deliberately getting an excess of something out of blood.

 

[heapsreal]

That probably means your aldosterone is low. You might want to have it checked, if you haven't already. Florinef is a common treatment for that.

As I understand it, if your aldosterone is low your kidneys will take too much water out of your blood. You can drink a lot, but your kidneys just keep taking the extra fluid out, so all you do is drink and pee a lot without increasing your blood volume.

minirin is another med which can reduce urine output and used in diabetes insipidus.

 

[Little Bluestem]

Mine do too, the effect is temporary, more so if I only drink water rather than have it infused.

My feeling is our bodies are deliberately getting an excess of something out of blood.

 

[Little Bluestem]

Mine do too, the effect is temporary, more so if I only drink water rather than have it infused.

My feeling is our bodies are deliberately getting an excess of something out of blood.

 

[Little Bluestem]

Mine do too, the effect is temporary, more so if I only drink water rather than have it infused.

Isn't an IV always saline solution, not plain water? Have you tried drinking saline or electrolyte solution?

 

[IreneF]

Isn't an IV always saline solution, not plain water? Have you tried drinking saline or electrolyte solution?

Yes. I drank about two liters of salt water during the day, then peed it out at night. Didn't help.

 

[Leopardtail]

Isn't an IV always saline solution, not plain water? Have you tried drinking saline or electrolyte solution?

Yes I have tried drinking saline, it's slightly better than plain water, but no matter how much salt not nearly as effective as IV saline. No idea why.

 

[SOC]

I used to take florinef but it didn't do too much. Basically my disease kept progressing no matter what I did. Possibly if I had seen a doc who told me to go to bed and stay there for six months some of this could have been averted. Who knows?

Yeah, florinef is not going to cure ME, although it might alleviate all symptoms if all you had was some form of OI. All florinef can do is improve quality of life by improving some ME symptoms. Unfortunately, all other symptoms will continue to progress if left untreated which can leave you feeling miserable even with an improvement in blood volume. Certainly appropriate rest when you needed it would probably do more for ME overall than florinef ever would.

You might want to reconsider OI treatment (florinef, midodrine, Strattera) after, or along with, other symptomatic treatments (including rest). Another thing to consider is that the standard initial dose of florinef is often not enough to make a substantial difference in low blood volume symptoms in ME. You might want to try a higher dose, if you haven't already, before you give up on it.

Were you taking routine morning BP measurements before, during, and after the time you were taking florinef? Sometimes (often?) you can see the improvement in pulse pressure when florinef is working for you. Do you know your morning pulse pressure? If it's low, then florinef is likely to help and you can consider (with doctor approval, of course) increasing the dose until your pulse pressure in more normal.

And, of course, florinef could indeed be completely worthless for you. Not every med works the same way for everybody.

 

[Leopardtail]

Yeah, florinef is not going to cure ME, although it might alleviate all symptoms if all you had was some form of OI. All florinef can do is improve quality of life by improving some ME symptoms. Unfortunately, all other symptoms will continue to progress if left untreated which can leave you feeling miserable even with an improvement in blood volume. Certainly appropriate rest when you needed it would probably do more for ME overall than florinef ever would.

You might want to reconsider OI treatment (florinef, midodrine, Strattera) after, or along with, other symptomatic treatments (including rest). Another thing to consider is that the standard initial dose of florinef is often not enough to make a substantial difference in low blood volume symptoms in ME. You might want to try a higher dose, if you haven't already, before you give up on it.

Were you taking routine morning BP measurements before, during, and after the time you were taking florinef? Sometimes (often?) you can see the improvement in pulse pressure when florinef is working for you. Do you know your morning pulse pressure? If it's low, then florinef is likely to help and you can consider (with doctor approval, of course) increasing the dose until your pulse pressure in more normal.

And, of course, florinef could indeed be completely worthless for you. Not every med works the same way for everybody.

I agree completely with the above. I doubt any single treatment works for most ME suffers - it's about finding the combination that works for you. Also a perfectly effective treatment can work, be wrong for you, or can be made ineffective if something else is deficient. E.g. CQ10 worked for me only once taking Ribose.

How much benefit you get from restoring blood volume ultimately depends on how depleted your blood volume is. I also noted that two different meds for reducing urination (thereby improving blood volume) were discussed (Florinef & Midodrine). Each corrects a different hormonal deficiency. Each each of he hormones (Vassopressin and Aldosterone) differently affects your blood electrolytes. It's entirely possible for ME patients to have a single deficiency, deficiency in both, or in neither. If you are markedly deficient in only one if might show up in your blood electrolytes, if partially deficient in both they would mask each other and need testing for both hormones (your doctors won't like that).

Nice post @SOC

 

[IreneF]

Yeah, florinef is not going to cure ME, although it might alleviate all symptoms if all you had was some form of OI. All florinef can do is improve quality of life by improving some ME symptoms. Unfortunately, all other symptoms will continue to progress if left untreated which can leave you feeling miserable even with an improvement in blood volume. Certainly appropriate rest when you needed it would probably do more for ME overall than florinef ever would.

You might want to reconsider OI treatment (florinef, midodrine, Strattera) after, or along with, other symptomatic treatments (including rest). Another thing to consider is that the standard initial dose of florinef is often not enough to make a substantial difference in low blood volume symptoms in ME. You might want to try a higher dose, if you haven't already, before you give up on it.

Were you taking routine morning BP measurements before, during, and after the time you were taking florinef? Sometimes (often?) you can see the improvement in pulse pressure when florinef is working for you. Do you know your morning pulse pressure? If it's low, then florinef is likely to help and you can consider (with doctor approval, of course) increasing the dose until your pulse pressure in more normal.

And, of course, florinef could indeed be completely worthless for you. Not every med works the same way for everybody.

All this was years ago and I dropped the florinef and the salt loading once I got too sick to exercise. My BP is much higher now, but I still get the gray-outs and see stars. My biggest autonomic problem is not being able to take a bath or shower because of the intense fatigue and weakness that lasts for hours, and which seems to be connected to tachycardia. I'm just ignoring these problems for now. They are symptoms and not causes.