How did covid jabs affect your ME/CFS?

[ceramo]

I have not posted before but am often moved by the posts I read. There are so few solutions out there!

I have a dilemma, I live in France and my covid health pass will run out shortly. Being over 65, I have to have a third jab to extend it.

However, I have had a really bad year, which may well be due to the initial astra zeneca jabs which I had in March and June. A London-based private doctor had warned me earlier not to get the jabs until necessary, as they might in any case not even be effective, given the particular gaps in my immune system. I have very longstanding ME/CFS, now with orthostatic intolerance, though I wasn’t actually diagnosed till 2013, a point when I had long been overworking and took a distinct turn for the worse.

After the initial 2 astra zeneca jabs I didn’t get any sudden new symptoms, but I did go downhill and have now reached a stage where just about anything will give me post exertional malaise. My sleeping pills are increasingly less effective, but I take loads of supplements, and try to do a very short yoga routine in the morning and a very short walk in the afternoon. Failing that, a mini circuit round the village on an electric bike (much recommended if you feel uncomfortable upright, as you get to exercise your legs without having to bear your weight). All this is manageable and actually essential, but it is devastating to spend so most of the rest of the time flat on the bed instead of even a single hour in my studio or doing gardening. Socializing is an absolute no-no now.

The French covid health pass is needed for cafés, restaurants, all cultural venues but more essentially, long distance forms of public transport. I haven’t been able to get back to London (my old home) for 2 years now, but had hoped to go in the new year. It is in any case not the easiest place to visit given a) all the walking and b) the much less regulated social distancing etc. on public transport. I can squeeze in a visit to see my grandchildren in Porto before the pass runs out, and I am determined to do this despite my fragility. But after that I will be stuck here, basically shielding at home.

My husband will be getting his 3rd jab which will probably be Pfizer, possibly Moderna. He will be free, and I actually approve of the French system which although irritatingly rigid, is reasonably sensible. But I am not sure whether or not I should risk a third jab myself. You might say, given my low state I should just stay at home and not worry about the health pass. But it is the feeling that my options would be even more reduced that frightens me. I would not even be able to meet a friend in a café, if I felt up to it. This feels like a vicious circle, keeping me down when I am desperate to find a way up!

[peege]

Hi, I totally get your dilemma ceramo. My son & family live half an hour from Marseille in Marcel Pagnol Country. They're coming over in December and I worry their passes will run out before their return. Personally I'd risk it, I dont think I could bear not seeing anyone or not eating at a café for a coffee occasionally (wearing masks). But thats me.

So do you have to have an actual 3rd vaccination in France rather than a booster? Are boosters available in France?

I expect you know the system here in England that immunosupressed and clinically extremely vulnerable are having their 3rd vaccination, (I dont know if its the same one again) this is 6 months after 2nd vacc. to be followed 2 months later by the Pfizer or Moderna booster.

The rest of us from 50 years upwards are receiving just the above booster 6 months after 2nd vaccination.

I can only tell of my experience, I have CFS & had Astrazeneca for the two vaccinations and Pfizer booster 6 months later. I had a sore arm plus two days feeling flu-like. Had it gone in to a third day I'd have taken paracetamol but was absolutely fine.

There's still a bit of confusion over here about 3rd vaccination/booster even health care professionals don't seem to get it which is utterly unacceptable and ridiculous grrrrr.

On checking my NHS covid pass the booster doesn't appear, so would this preclude me from travelling to France next year I wonder.

Good luck with whatever you decide. Peege

[ceramo in reply to peege]

Thank you for your thoughts, Peege.Unquestionably I would just go for it if all I had to suffer was a sore arm or a low week (or two). Apparently many ME sufferers however (like me) appear to have been impacted in a much more longstanding way.

There is a protective regime for before and after having a jab, suggested by the US ME/CFS specialist Nancy Klimas, which involves taking strong antihistamines, but I didn’t know of this when I had my first 2. And I don’t know how effective it would be - apart from the antihistamines I was already taking the other supplements she suggested.

It is only the over 65s whose passes will be so abruptly terminated here, so you probably don’t need to worry about your family’s visit in December. However, everything does feel very uncertain, particularly between the UK and France, and it does seem anomalous that your booster is not recorded on your UK health pass. I’m not aware of a distinction between a 3rd jab and a booster here, but I am able to follow these anomalies and how (or if) they get resolved in an English language monthly newspaper here (it now has an almost daily online newsletter, essential) called the Connexion. The UK Embassy does follow up these things and they usually get ironed out in the end - and maybe your family know of the Connexion as a general source of info (we have found it immensely useful over the past 18 years here). The uncertainty is of course disconcerting, but I think that as long as you have official proof of your booster, you will be able to come to France! Meanwhile, enjoy your family visit to the UK in December.

[VellBlue in reply to ceramo]

Personally I'd also say go for it, but really it has to be a decision that comes from you. Maybe wait a bit longer and see how you feel? If you are anyway not making use of your covid pass, then it doesn't hurt for it to lapse, and right now cases in France are not so high, so your declining immunity to covid isn't so much of a risk. If the cases start increasing again then you may decide it's worth the risk to take the booster to protect yourself properly against covid. Or if you feel restricted without the pass, then it's time to get the booster. It'll be Pfizer or Moderna this time which may not have the same effect on you as Astrazenica and you also don't know for sure it was the vaccines that caused the decline in your symptoms this year.

All the best!

[VellBlue in reply to VellBlue]

Here's some data on the booster jab.

How much taking the booster improves your immunity against covid.

[ceramo in reply to VellBlue]

Thank you VellBlue, that is all sound advice. My pass runs out mid-Jan and I had been thinking of sneaking a quick trip to London just before I lose it, to see family and friends I last saw over 2 years ago. But this is panic-driven escapism, I guess, and as your chart shows, my immunity would be very low at that point. (Though in fact I may never have gained much immunity from the vaccination, according to tests on my immune system in 2017.) Anyway I think I will book the 3rd jab along with my husband (we are eligible from mid Dec) and just see if I feel well enough in a month’s time to actually take up the appointment.

Right now I am terrified of being brought any lower and being stuck with my life on hold like this, missing out on so much and by now very isolated from my former life/interests and contacts here, some of whom have died or moved away.

As you say, I don’t know for sure what has brought my energy down so low, but the Astra Zeneca certainly didn’t help. I also think the ongoing length of the pandemic is a resilience issue for us all.

Am now trying out NADH ‘constant’ which is pretty expensive as supplements go (anyone have a view on this one? It says Prof. George Birkmayer on the box and comes from Austria, and is supposed to support the mitochondria to actually produce some energy….) starting with just one 20mg mini pill before breakfast. In theory you can take several a day. I don’t get on well with booster type supplements, other than eg. B12 , but if this one should work, and give me just a little more resilience, I would certainly go for the jab. That would mean I might then be able to think about going to London (now a very risky place in my view) a few weeks later, if I feel up to it - and if we are still allowed into the UK without quarantining, which now looks doubtful according to the latest news. I used to really enjoy planning visits but of course that has changed for all of us.

Luckily I have time, and yes, as you say, I am not at risk at home here in France and I can wait and see. If I have to be ill then here is the place to be.

Thanks again VellBlue for helping me think!

[VellBlue in reply to ceramo]

Good luck and hope the new supplement helps. X

[HGP1]

I had my booster (Pfizer) on Tuesday afternoon, didn't react as badly as 1st dose az which took 12 weeks to get over and some uncommon side effects but a little worse than 2nd which I just had the more usual flu like side effects and a bit of PEM from.

The booster gave me strong muscle & joint pain similar to levels I got from 1st dose AZ, quite unbearable at times but codeine took the edge off, fever (previous ones I was feverish but didn't record a fever and with 1st dose actually had drop in temp at one point then just raised body temp), bad diarrhoea, off food and a little nauseous following day, fatigue not too bad needed to stay in bed but could look at phone occasionally, listen to a meditation etc although I wouldn't expect PEM to kick on yet based on previous doses as still in the flu like phase.

I will aim to come back in a week to give an update re PEM and anything ongoing

So far it definitely has been nothing like as bad as first dose of AZ but worse then second one.

I was back to pre vaccine baseline before my booster though.

Does France have any kind of exemption they can add to the covid pass to say not well enough for Booster to enable to still have access to travel and hospitality etc? Of course reduced chance of serious covid is very much a benefit as well as travel/access to society!

[ceramo in reply to HGP1]

Sounds like quite a bumpy ride and I hope it is short-lived! I look forward to your update. As long as it is short term it is definitely worth the unpleasantness.

I didn’t get anything so dramatic from my 2 Astra Zeneca jabs - it is just this rather sinister overall worsening of familiar symptoms that makes me hesitant about the booster. I doubt they would make exemptions in France; on the contrary, they are insisting on added protection (ie. boosters) for over 65s here, while younger people can carry on for a bit with their existing health passes.

However, I do have one symptom in particular that is not so longstanding, in the sense that I hadn’t fully clocked it till recently: I seem to be lacking adequate oxygen. It shows up particularly when having phone or skype conversations, when I start feeling I can’t get enough air, and I also have more trouble reading to my grandchildren on Facetime, something I have regularly done for ages. And I also have real problems wearing a mask for long on end, or even being in a stuffy room. I have to cheat and have a break! I wonder whether this is familiar to anyone.

I do slow breathing exercises at the same time as my essential mindfulness-type routine 3xday (Autogenics, a German variant) and this is immensely helpful in unwinding me. But the physiology is puzzling, as I have never knowingly suffered from lung or cardiac problems, quite the contrary. I note (from following research eg. on Health Rising) the curious finding that ME/CFS sufferers are found to have some mysterious cardiopulmonary characteristics, like substantially reduced blood volume(!) and a small heart, or in particular a small left ventricle, so maybe circulation problems and Co2/oxygen exchange are at the root of this particular symptom. I already knew I had a small left ventricle from an earlier routine check, but the cardio regarded it as of absolutely no significance. Going downhill may of course have as much to do with creeping old age as with the jabs (I am now 78 for goodness sake).

Wishing you all the best with getting over your booster, and many thanks for sharing that with me. Let me know how it goes!

[HGP1 in reply to ceramo]

I can't wear masks due to them making me breathless. When first tied I started to lose my vision and go faint. Now I can manage if sat/laid down but must catch my breath first. If I have for a prolonged time get a headache or migraine.I found the surgical ones most tolerable as they don't suck into mouth when breathing and don't heat up as much as the dust mask style ones.

Have you got an oximeter to see what your oxygen levels do? If oxygen okay maybe see what your pulse is doing when get breathless.

I mention as I am having to use my heart rate monitor when out of bed as vaccine has triggered a combination of PEM and over medication of my thyroid. When I push myself and HR increases more than normal even if I don't notice palpations I do get breathless.

The symptoms of over medication and severe ME were quite similar for me but thankfully when thyroid related can do something about that. I know not so helpful when don't have a thyroid condition but you may not have thought to see what HR is doing

[ceramo in reply to HGP1]

I am sorry the jab has knocked you back so much. You seem pretty good at sussing out what to check up on and how to deal with it, but of course it is extremely difficult to get it right and it is very anxiety-inducing when things are not right and you have to work out how best to get back on track.

Your tips are really helpful to me, and I do have one of those oxygen things you put on your finger, and another bit of kit for heart rate and blood pressure, but I haven’t really used them at all as yet. Not sure either what to do with whatever I might find out about any irregularities.

And I sometimes think, all this in itself takes up precious energy and does it risk getting obsessional? What can I (or any of us) actually do about our situation?

I have been on thyroid medication for quite number of years now, not a high dose. After a lot of experimenting with Levothyrox and others I have ended up on around 70mg of Erfa, a Canadian natural dessicated thyroid, available in the UK - but all natural thyroid is banned in Big Pharma-dominated France, so - given new customs restrictions - I will have to actually go back to the UK to stock up (or my husband will, if I decide not to risk getting my booster).

What you relate about going hyperthyroid after the jab reminds me that I do have difficulty knowing the right dose, or in recognizing specific thyroid symptoms as opposed to PEM or other ME related problems. GP here only interested in THS, and mine was nicely low earlier in the year, so (feeling as if I might be a bit hyper) I dropped dose slightly to 60mg = one grain (in oldspeak). But all this messing about again might tie in with going downhill. I did restore the old dose around a month ago, so should be now on the up. Not sure what symptoms are relevant here.

I agree that the basic surgical masks are the least problematic, and also easier to cheat with through the nose. And my default position of comfort and recovery has increasingly been flat on my back. Any other position is inherently more or less stressful, but walking (not far) definitely easier than standing eg in a queue, however briefly.

Migraine is paradoxically less debilitating now than it was before I got the full blown ME and a diagnosis in 2013, and then got started on taking loads of supplements. I also have a very effective migraine remedy, one of only 2 regular prescription drugs: sumatriptan. I can ward it off with just half a 50mg tab, eg when it (often) threatens in the early hours. My other essential drug is a benzodiazepine sleeping pill, which has ceased to work very well, a major cause for concern, as I can’t really increase the dose any more. But then I have been taking this one for 40 years and no longer tolerate alternatives very well. I top up with large doses of Melatonin and herbals and cross fingers.

I would be interested to know more about your thyroid condition in relation to PEM, and how you are managing that at the moment. Good luck! It hasn’t yet been a week since your booster and I hope it will resolve soon, relatively speaking….

[HGP1 in reply to ceramo]

It's now about 2 months post booster and think I'm at a similar level to pre all the vaccines. My thyroid levels are still much better than they were a year ago (and since I first started treatment in August 2018) so whatever got kicked back into action seems to have helped me longer term, I'm not sure it was quite worth the side effects of first dose but I managed not to catch covid while living with someone who had it so as far as protection form covid goes definitely worth it! This time of year is always worse for me ME and I tend to get optimistic at new year that this will be the year I can do more but have a dip until April/May fingers crossed this is the year I don't! Ha but all in all I would say the booster didn't do me any harm and may even have helped

[ceramo in reply to HGP1]

It’s really good to hear the booster didn’t do you any harm. I have had a slightly complicated Christmas season, for good and less good reasons - we went to visit family in Portugal for a week before Christmas, which was great; but then it emerged that they would then at the last minute come over to France over Christmas and new year, as our grandson’s Portuguese primary school deferred the start of the January term. Even better! On the other hand I haven’t been able to keep up, as the extra stress of having family around (in the best possible way) has got to me in the end. Particularly as our son had to go to Barcelona for a few days after new year for his work, caught covid on an apparently unventilated train, and on his return to us had a positive test and had to send his family back to Portugal without him, and then had to self isolate with us here in France. It has been strange having to keep our distance for so long - as you too must have felt - but he is now clear and has just flown back to his family in Portugal. I did take stuff like vitamin C and spray my throat etc whenever I felt a virus-y feeling coming on, and this has worked.

I am due to have my deferred booster at the end of this month. I hope I will feel more stable and rested by then. However, my French health pass has sadly already lapsed and it is not clear whether they will reinstate it here, where Macron has vowed to ‘piss off’ all those who haven’t completed 3 doses by now. If not, I will have to stay locked down until they change the law, as I won’t be able to go anywhere or do anything much (not even go to a café) without his new V pass. Neg testing no longer gets you by. Even for travel.

So we will see. I have nearly a couple of weeks to decide whether to take up my appointment. It is likely to be a Pf on top of my previous 2 az. I have some concerns about how effective it is against the increasingly dominant omi variant, however, and I was long ago advised not to risk any vaccination whatever unless absolutely essential. And I would be taking it above all to get the pass, if that is possible - maybe not such a good idea.

Wishing you all the best and to stay hopeful with the coming of spring in a couple of months…

[HGP1 in reply to ceramo]

They really are coming down much harder there on unvaccinated from odd bits I've seen in the news. Can you get an exemption from medical professional or have they tried to stop that too unless very limited allergy related risk? I know what you mean about family, I only have limited capacity being around my mum until it's time one of us went home! Usually day 4 is the limit

Glad you got to see them tho and yes really weird not being able to be neat loved ones in the same house, I think after 3 days I risked a hug facing away with masks on etc.

The lack of windows on trains vey much puts me off them at the minute, the older ones you could open but newer ones they seem to have got rid. Plus in Barcelona the metro always feels warm and unventilated!

Hopefully you can get some rest and not worry too much about the decision until a day or two before

[ceramo in reply to HGP1]

4 days has always been limit for me (around my mum, who died aged 103 a few yrs ago) - 4 days after stress, I get PEM! I first noticed that around 1970 but it made no sense at the time. However I would have endless patience with grandchildren, if it weren’t for the exhausting impact of their sheer awe inspiring energy. Missing them all incl my newly negative son. Altogether it has been nearly 6 weeks mostly together and I am grateful for it!

[doglover1973]

Hi ceramo I fully sympathise . I think it's wrong to make it mandatory in any way . After 20 odd years of ME I'm not taking the risk and happily I don't have to in the UK. I don't mix widely and always wear a mask if I go out . I wouldn't risk it - if I were you. The vaccine is for well people . Just my view 🙂

[ceramo in reply to doglover1973]

Thank you Doglover. I think you are right, the vaccine is for well people, though some people with ME do apparently react well - reaction to the first 2 jabs would be a good indication. I remember there was a period earlier in the pandemic when vulnerable people in the UK were expected to shield, and the French distanced themselves from this decision. But now it is as if the French are setting up a situation where some of us may be forced into a decision to do just that after all. Will sit it out for a bit and wait and see… The problem is that our family is split between Portugal and the UK, while we are in France.

[doglover1973 in reply to ceramo]

I know. We can't win can we .. I think it's very tricky if you have family across several countries . Take it steady . It's tempting to do things while you can but remember the golden rules of pacing - wherever you are . We're tortoises but we'll get there .

[peege]

Hi ceramo, just wondering how you're getting on and if you went ahead to have the booster or got to Portugal/UK & safely home to France. My son and little grandson came over on December 10th for another grandson's birthday weekend. All went well apart from being barred from their return flights because the 48 hour PCR test was 2 hours out of date. Was very costly, lost flights, purchased new flights, 2nd PCR tests at £110 (again) however, they're all still negative recovid.

They were due back to spend Christmas with me last Friday with daughter in law arriving on 23rd, all that's been rightly cancelled due to omicron. I'd rather we're all safe than worry about being alone for Christmas .

[ceramo in reply to peege]

I’m so sorry Peege, what a nightmare. I must be one of the few people who actually got lucky despite the new travel restrictions - which are not yet very common within the EU. So I did get to Porto for a few days, lovely break, if very stressful. But meanwhile the Portuguese govt. cancelled the first week of next term, giving children at short notice a longer Christmas hol, so my Portuguese family decided to come over to France. It is crazy, we had only been back here for 5 days when they arrived. Obviously I crashed after the journey home and was only just coming out of it when…here they are!

I am loving it but not sure how I will make out. I am now taking NADH, and occasionally 25mg Pregablin, a new discovery (actually prescribed to my husband), which seems to mitigate PEM, that feeling that I have gone way over my limits. Or rather, I do feel it, particularly towards the end of the day even after lying down all afternoon, but it takes a different form from that ghastly experience of being unbearably way beyond exhaustion. I lose focus, difficulty finding words and my hearing blurs but it is less ghastly - and I can somehow keep going (so far, but we haven’t even reached Christmas yet!)

We had expected to be alone for Christmas and I really feel for you that it has worked out so badly for you.

[peege]

Aw thanks, it's alright really. I'm counting blessings that the whole family are safe wherever they are, just wishing I'd done the 6 hour round trip to see son & grandson when they were here 2 weeks ago when all my offspring, their partners plus 6 grandchildren (including new baby) were together for a few hours in Cambridgeshire. Mind you, I'm still recovering from burning myself out a few weeks ago (long story). Think I'll double my daily Ubiquinol again to get out of this trough and I really must look in to your NADH, I'd never heard of it & wonder if it's available in England. Amazing that pregbalin is helping you and how brave to try it. I've got a stash of Sertraline the gp advised might help in 2015/6 when he diagnosed CFS, it didn't help however, that was then so 🤞. It's just fantastic that you got to Lisbon, well done you! It's wonderful to be in the bosom of family love - especially if you can escape to recuperate regularly. Lisbon is at the top of my list of places to visit when I can.

Have a really wonderful Christmas with your family around you ceramo and very best wishes for a happy and well 2022. Hope the sun shine in your part of France too, Penelope

[ceramo in reply to peege]

And the same to you!Caroline

[MEahahaha]

Everyone here read Understanding ME @ nightingale.ca This is what ME is. CFS is many other p ossible treatable things. Be well👍