Hello new on here new diagnosis looking to share knowledge and understand this condition

[Duncansyard]

Hi new diagnosis looking for direction re mamagemt and promoting healing

[cazzaleo]

Hi Duncansyard!

How are you doing? Have you been ill very long? What kind of things are you doing to try and help?

I’ve been unwell a couple of years now and was diagnosed last summer. Things were going very downhill for me at the end of last year to the point where I found I could barely move my limbs when I woke up. It scared me how quickly it seemed to be progressing in a bad way then. Luckily my work have been great and they suggested I take a prolonged period of time off to focus on trying to get better.

So that’s what I’ve been doing - resting, pacing, mindfulness, acupuncture, supplements and more recently I’ve been seeing an endocrinologist. He’s put me on T3/liothyronine as my free T3 levels (thyroid) have been consistently low, even though my TSH and free T4 (other standard thyroid measurements) are normal. Might be something to look into if you haven’t already as I think the new medication is starting to make a difference.

I’m also hoping to start hyperbaric oxygen therapy soon. I’m having an assessment tomorrow afternoon and fingers crossed I’ll be able to start the therapy soon.

Have you joined any FB group for CFS/ME?

[Duncansyard in reply to cazzaleo]

Hi there I have been ill for a year now to begin with bed bound better but minute I over do it relapse not as bad as before but I find it hard to cope my mood goes low but I don't know how to cope or what to do been having acupuncture for nerve pain after shingles that is now helping persistent gland neck pain also have a non specfic gastric reflux swollen oesophagus I had to give up work taking time out to try to really heal trying to build up walking and activity eat healthy avoiding wheat dairy soya put on lot weight so trying to get off now I have lost confidence in myself and my body and it is so sad the way people and some medical professions dismiss this illness going to start taking fish oils and vit d? And increase good oils coconut and olive oil

[Starry]

Hi and welcome. I am still going through the long diagnostic process myself so in a similar boat.

Ive been reading a bit about tue medical controversy over names and brain inflammation. I had an anti inflammatory diet for a while to help a different condition and surgery recovery and wonder if including things like ginger and turmeric with pepper the way I did may have contributed to the modest improvement to date. Who knows....

[Duncansyard in reply to Starry]

Be really interested in the book you are reading I have ten on the go but lots inconclusive contractictions

[Starry in reply to Duncansyard]

I admire you. I struggle with books due to concentration issues. Less a book than various online resources.

I found the information on tue action for me charity site good and clearly presented and they have a research bent . They also have a very good pacing booklet resource recommended by my specialist service. actionforme.org.uk/what-is-...

I read their monthly research news write ups and found the 2017 annual science collaboration notes useful as it talks about where the state of knowledge is currently rather than whenever a book may have bee. published as things are finally progressing. Theyve just had their 2018 one which i will read too when its out.

Conference report

actionforme.org.uk/news/cmr...

Research news

actionforme.org.uk/news/?ta...

Eg

actionforme.org.uk/news/lat...

actionforme.org.uk/news/res...

Other resources

The ME pedia is a very good startpoint

me-pedia.org/wiki/Welcome_t...

Ive just been pointed to the canadian consensus doc, thats a good medical 2017 round up of state of play on diagnosis knowledge and treatment by their top specialists.

mefm.bc.ca/single-post/2017...

Tons of thorough background explanations of ME stuff on

phoenixrising.me/research-2

I also liked this usa self help site on Supplements (they call it cfids)

cfidsselfhelp.org/library/d...

Hope some of this is of some use. My main takeaways so far is that

1. Its neurological with knock on effects across the board, for me the jose montoya brain scans were eye opening

2.there are believed to be multiple subgroups or different types which is why things are so often contradictory in small research studies.

3. Everybody has a different hypothesis and viewpoint and its important to be careful of the biases that causes embedded in whatever you read.