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You're not a fraud!

Sluggishandtired profile image

theguardian.com/science/202...

Hello all, I'm also on the Thyroid forum, but was originally diagnosed with CFS in the early '90's. A couple of years later I developed Thyroid Cancer and hence, life has been confusing for doctors. However, I believe I have had CFS since I was a child and I had several months of mononucleosis and it all reared its ugly head later in my adult life.

From America, I was diagnosed by my OBGYN for my chronic fatigue after several months of trying local GPs who said it was all in my head. My OBGYN was a godsend for me if there ever was one. We don't seem to have access to OBGYN's in the UK unfortunately, or at least cannot access them without a major issue. But he was awesome, and was also responsible for getting me to a surgeon for my cancer. I also was able to work with another doctor who was doing research in CFS/ME and kinetic energy. That helped me a lot. I also regularly injected B12 for myself, but that soon came to an end in the UK.

I've been in the UK for nearly 23 years and it has been a struggle to deal with doctors who, when I mention my CFS don't even take me on. So I have to research everything myself and be my own guinea pig.

One good thing that has come out of COVID is the fact that governments and medical practitioners cannot overlook long COVID in patients. I knew this would be a bnefit to all of us in the ME/CFS community who have been hammering on about their conditions without success. I have attached a recent link from the Guardian above related to ME/CFS/Long COVID which may give you some encouragement.

You will find that gut health is really important to your symptoms and I have given up milk and dairy products altogether. Also, sugar is a problem and best if you can get any sugar through fruit and vegetables. Yoga stretching is good for your muscles if you can muster the energy - I find it is very helpful.

The best thing that this community can do is share information as you find it and support each other. There is also an official ME/CFS network - meassociation.org.uk/ - that you may find good information on.

Thanks for letting me share!🙂

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Sluggishandtired
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peege profile image
peege

Thank you very much for taking the time and energy to share this. There was also another article on me/cfs in the guardian online today.,it'll come up in The Guardian's online headlines when you open the above link (today, 11th July 2023) ××

I might add that I'm taking antibiotics at the moment for a chest infection (2nd this year). I remembered to start probiotics 4 days ago. Instead of reading on the bed until 11am before summoning the energy to shower/dress I woke late at 8.45 and was dressed & downstairs by 9am! I'm sitting here, reasonably alert for a change planning to pop across the road to the Co-op 🥳

I'll now experiment taking probiotic year round (as well as December to April when I take Azithromycin 250mgs on Mon Wed & Fri to help avoid chest infections).

_Sarah_J profile image
_Sarah_J in reply topeege

Microbiome is at the root of so many illnesses!! I don’t trust probiotics though- they’re so random and limited. The microbiomes in our gut are as complex as the flora and fauna in the rainforest. I did go on a pre and probiotic diet for quite a while for ADHD ( now I realize the increased ADHD symptoms are ME.) I can’t say if it helped or not. Maybe studies will come out using fecal implants. That would be interesting.

peege profile image
peege in reply to_Sarah_J

Yes it would! I'm now having a go at Zoe's 50 plants per month challenge . Just to see what happens. P

_Sarah_J profile image
_Sarah_J in reply topeege

I’ll look up this Zoe challenge!

peege profile image
peege in reply to_Sarah_J

I must look it up again (memory fog🤪) !

_Sarah_J profile image
_Sarah_J in reply topeege

It looks interesting, and worth trying out, but I don’t currently have any of the necessary stamina to delve into it. Maybe at some point! 🤞🏻

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