New Research Finds Brain Inflammation Plays Significant Role in Pathophysiology of ME/CFS Patients

You have to watch the video and listen to the questions at the end. There are still no treatments to reduce inflammation in the brain, but Dr. Younger and his team are working on it and they have a working theory. Reread my original post. I tell you exactly how to find the video on YouTube.

Hi Beverley,

I met a gentleman who developed M.E after a major heart attack. I will pass this on to him.

Sarah

it's interesting to me that there are different routes into cfs/me. It doesn't change the fact that it's an awful condition but, I think explains some of the differences in symptoms? there was another report I read by a Japanese team that showed specific areas of inflammation in the brain and corresponding symptoms that occur.

Beverley

Hi Beverley,

it's unclear how it all started for me. No viral infections, no major physical trauma, although I did have emotional trauma in the unexpected deaths of my sister and brother in a car accident and both parents passing from cancer in the space of 14 months. My neurologist says that may have caused it.....who knows!

I have read that brain inflammation can be seen on an MRI of which I have had two and nothing except a small bleed showed.

All research is worth reading and I'm willing to try most suggestions when it comes to trying to find a cause/cure.

Sarah

Although viruses have been attributed to causing ME/CFS ,there are other factors like stress and toxins which can affect the immune system.

ME/CFS is and autoimmune inflammatory illness . Everyone would like to find some treatment to cure this illness, but how many people are prepared to try new, untested, treatment which may be the answer. You hear people seeking a cure and will try anything but will they? another question are you in the UK?

Hi, yes I'm in the UK. I tried various elimination diets after reading they may help. Exercise programs where you build up the amount you do. My Neurologist suggested pacing, 15 minutes of doing something (showering, getting dressed etc) then 15 minutes of rest. I've tried herbal and non herbal supplements. I've just started gentle yoga. I'm vegetarian and the only thing diet wise I wouldn't do is add meat or fish to my diet. Incidentally all blood tests showed no vitamin or mineral deficiency.

I want to be able to spend time with and enjoy my four grandchildren so a cure is desperately needed.

Sarah

Hi Sarah,

I started a reply to your other reply but it disappeared! Just wanted to answer to this one that I am also vegetarian and was wheat and dairy free before cfs/me. My blood tests were also in"normal " range but, I have been taking feroglobin for about 9 months now and feel some improvements though not cured. I am doing less also I feel. I have more mobility issues but am definitely not feeling as ill as much ? brain fog in smaller amounts? pain less. Nothing has disappeared but, I aren't loosing as many full days to bed rest. I am not going out much but, I am happy with that sacrifice. The other things I have done differently this year is have private physio-definitely helped, loose two difficult relationships and no longer drink alcohol like I did. I also feel I have a reaction to yeast (balloon if I have a glutenfree roll) so am looking at that. I believe all of this helped me this year. I aren't actually ready to commit to yoga yet. My Nhs physio stated I'm actually still doing too much and need to cut back before adding things (I had tried swimming for a small amount and spent 10 days recovering)

I would definitely recommend the feroglobin. Yoga is a gentle way of exercising and I hope that is helpful to you. I was doing yoga a few years ago and I think it is really good for stiffness.

Beverley

I also have had a head MRI and nothing showed up.

You had many close family bereavements in a short space of time and I can only imagine how painful that was. the ME association says trauma can cause cfs/me and I know someone who developed fibromyalgia and cfs/me from a relationship breakdown. For me, I had a fractured spine, shock, disassociation, Ptsd symptoms and was out of it. I struggled to remember things that had just happened like walking across a floor or whether I felt someone touch my leg, it was weird. So, I fully believe mine was an overload of the senses at the crash. I was totally calm and even laughed as I knew the guy was going to hit me and there was nothing I could do. I was very calm. The shock hit when I got to the hospital. I still believe I was unconscious for a time as I don't remember being thrown backwards as the seat collapsed. As i recall the events, I still know how lucky I am to be here.

The research article I mentioned sites PTSD as affecting the system and I know that it's the body trying to protect itself and that's how I see cfs/me too. It's like a faulty alarm system that sends in security when it's not needed.

Beverley

Like you, I have no idea how it started with me. I have had no serious trauma, and no viral infections.

I will give the feroglobin a go Beverley.

The brain fog for me is a killer, the other week I was crossing the road and couldn't remember if I should go when the lights were green or red. I started walking on a green light and panicked and shot back on the pavement thinking I'd got it wrong. My husband said he's dusting off the life insurance policy. 😂.

The first year I got CFS my GP sent me to a physiotherapist but after two months of weekly sessions there was no improvement so it was stopped.

I've never drunk alcohol so can't reduce that.

My hubby is convinced the trauma of losing my siblings and parents so close together caused all this, he asked the GP is I could have PTSD but the consensus was initially that I was depressed!

You've had a awful time and like you say are lucky to be here. Oh to go back to our old lives 🤔.

Sarah

I really struggled at first with the brain fog, slurring my words and stopping in the middle of a sentence and asking what I was saying. Or I'd just stare straight ahead and come back in the room with people talking to me and I didn't know I'd been talking with them minutes earlier. Scary stuff cfs/me. It could be ptsd from loosing your siblings and parents so close together. It is hard to know how such shocking events will affect us.

Are you a member of the ME association? I ask because they have a card you can put in your purse saying you have ME and giving contact details of a designated person to contact in case you get into difficulty. I think its a good idea and am thankful I haven't had to use it !

My old life was very busy and I sure do miss aspects of it. I believe that I have had a massive learning curve from all this and am still learning and do what I can to educate others about ME as well as Aspergers/autism as one of my children is awaiting diagnosis which also only became apparent in the last couple of years! I am still learning and hope to teach others in the future. Still have hope of recovery 😃

Beverley

Hi Beverley, I'm nit a member of the M.E association but I will look into it today. Is it UK based?

Sarah

hi Sarah,

Yes, it is in the UK. I phoned them to register. They have lots of information and keep up to date with current research etc and send regular magazines ☺

Beverley