This was the conclusion I came to when reading the patient stories. I think they probably do really help people with some conditions, possibly misdiagnosed as ME, especially after hearing from
@Tal who comes across as very sincere and having been through a very traumatic experience - and very deserving of our understanding here in S4ME. But none of the patient stories sounded like ME to me. And I have to say, in all honesty, none of the people I have encountered with ME cite pains, headaches, etc, as their
primary symptoms ... far more likely to be extreme exhaustion, PEM, etc. Yes, lots of pain as well, but secondary not primary ... though others can obviously correct me if I'm wrong.
Several people have asked me for this response so I’m hoping that it gets about to everyone.
Firstly I would like to say this ward isn’t solely for people with M.E
They also deal with Neurological disorders and illnesses that haven’t been diagnosed. They are just ill with an unknown reason.
The medication I am on is Sertraline, which is an antidepressant which is really good for calming down the central nervous system.
I am also on Quetiapine, which supports sertraline by making it work better as well as calming down the central nervous system itself.
It took me a while to get to full dose of these medications as I was on a different type of medication before that I had to be weaned off on. Then I had to start at a very small amount of one of them at a time and gradually build up the due to chemical sensitivity. I was absolutely amazed how well I was able to tolerate the medication. It can then take up to a month or so for the medication to take effect. So it took over three months for that to be in place.
Unfortunately there Is no test that can be done to test if your central nervous system is over aroused. You can only know this by the symptoms it causes. The Consultant doctor there has over 20 years experience with the illness and they have said they have learnt so much about the illness especially in the last 10 to 15 years.
From the symptoms I had he was confident that it was a CNS over arousal thing but he said it’s not the case with every single person with M.E because everyone is different. They have treated so many people there with this medication with good success.
Upon arrival I had several blood tests for all sorts of things. They really were thorough.
The medication was just one part of it. I also had an occupational therapist, a physiotherapist, and a cognitive behavioural therapist which made up the multidisciplinary team to deal with this illness.
It was all those people (as well as all of the nurses) along side the medication is what got me better.Their approach really does work. I’m not the only person with severe M.E to have benefited so much with what they have to offer.
You have to be aware though, as the saying goes - you can take a horse to water but you can’t make it drink it. If you’re not willing to work with them for whatever reason or you don’t take what they have on offer onboard then they can’t do much with you.
Yes they are fully aware that M.E is at physical illness. But unless you are not human due to the nature and the length of time of the illness you do go on to develop psychological problems even without you realising it. They deal with every aspect of the illness physical and mental.
All therapists there are complete experts and have such vast experience working with the illness and have had great success with what they have to offer.
They really do know what they are doing and they are excellent and experts in rehabilitation as a whole.
They assess each patient and put them on a specific program designed to meet individual needs.
Each week you have a meeting with each of the therapists at a length of time which is manageable.They see where you are up and what you can do and increase your activity level accordingly with a pacing and graded approach.
Even though I didn’t think this approach would work I just took everything on board and did what they said. That is the reason why I got as well as I did.
Doing this at home isn’t the same as being in the hospital with 24-hour support. They are there with you every step of the way answering any queries problem or issues, and of cause supporting you through the million setbacks you come across with this illness.
The reason it took so long is because you have to take baby steps initially. The better you get the bigger jumps you can make.
I came into hospital only managing to just about eat my meals and use the commode next to my bed.
If a footballer was to break their leg as soon is it mended they can’t go and play a full game of football straight away. They have to take some time to build up their fitness and get the leg strong enough to play a full game of football again.
It’s exactly the same principle although much more complex. My body was deconditioned my muscles were so weak. After being in active for years and years on end, my body had to be built up slowly and gradually. If I was suddenly to do more than what my body was capable of doing then I’ll just keep going backwards and getting worse. Input and advise from my physio with regards to my body and muscles was valuable. The same with all the therapists there.
Given all this that’s why it took so long. Even though I am miles better now I still have a long way to go and my rehab program is still continuing. Rehab from anything you have to do in a pace and graded way. You can’t do everything at once as you gradually have to build up your body to tolerate things. Nothing ever happens overnight. Although rehabilitating yourself from severe M.E I think is one of the longest rehab duration time there is out there.
Initially it was really scary being put on a program and been asked to do the activities I was being asked to do but it all paid of in the end.
My cognitive behavioural therapist was vital again with the psychological aspects of it all, he really was amazing.
Sorry for the long reply but I couldn’t have done it any shorter in order to do the answer justice. I hope this has answered all your questions.
Natalka
