United Kingdom: National Inpatient Centre for Psychological Medicine (NICPM)

And this has always been a big problem that this community is up against.

When a person who is ill and suffering goes to a Dr and gets a diagnosis the person may well have zero knowledge of that illness and accept the Dr's conclusions. As a result the powers that be in the UK (and I presume elsewhere) can use this to manipulate -- by watering down what a diagnosis of ME means. Or in other words -- take the opportunity to conflate ME with many other conditions that are poorly understood but amenable to treatment.

This we all know and understand but there have been (again as we know) many stories and media reports of people with ME and at least a portion of those seems to fall in the almost certainly not ME category (I'm thinking of those stories where the person is given some standard Tx and goes on to do amazing physical feats post Tx). But the people who are being used this way may not have any other information to go on beyond what they've been told by Dr's and when they are indeed made well are also bound to be grateful.

All we can do is hope like hell that a biomarker is found soon and then replicated in a way that makes it accepted by clinicians as a bonafide way of identifying and separating out those with ME as we know it. Only then will treatment be available that will actually help those of us who have tried all the other cures and are still sick.

 

I would suspect that there is a response bias in patient accounts anyway?

Whatever, I'm glad that @Tal had an improvement, and wish them the best of luck and future happiness.

 

Yes Luther, very much so.

 

As a fellow Yorkie, I can say that being confined to Leeds would provide me with every incentive in the world to improve and escape. I wonder if they could help with my chronic tongueincheekitis (we really need a hiding under a chair emoji)

 

You think anyone can?!

 

Abnormal Hyoglossus findings in fictional English male: A Case Study.

A fictional male, who recently had his apex removed from his fundament after a tragic accident, presented with unusual nerve and muscular symptoms in the Hyoglossus region...

 

Always enjoyed my visits to the 'The Duck and Drake' in my formative years/misspent youth (take your pick) .. had a great choice on the jukebox to go with the great beer and company. In latter years, would be the same and/or The 'Stanley and Audrey Burton Theatre' to see some Contemporary Dance .. seems I got culture after all.

Wishing everyone improved health and every happiness. John

 

I was confined to Leeds for 3 years and spent most of that time in the Newlands pub behind Hyde Park, since sadly firebombed. It was a patch of grass last time I looked on google Earth, with not even a remembrance plaque to say "TiredSam drank here".

 

Leeds is brill! (Says the man who committed the ultimate betrayal and moved to Manchester--though, in my defence, at least I'm in socialist Salford now I'm past my city-centre-living days!)

 

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

 

Thank you for taking the time to write such a detailed reply Natalka (@Tal), much appreciated. I'm glad you are doing so much better.

Would you mind a further question? Would you be willing to describe your symptoms, eg, whether you had things like post-exertional malaise, brain fog (problems with memory, comprehension, word finding etc), unrefreshing sleep, or immune type symptoms (feverish, flu-like, swollen glands, allergies/intolerances) and so on?

Edit: typo

 

Thank you so much for your well wishes xx

 

Gladly

My symptoms were

Severe fatigue and exhaustion
Little energy
Post malaise
Brain fog
Slip of the tongue
Poor sleep
Severe pain and discomfort, mainly in my head
Noise sensativity
Chemical sensitivity
Generally felling like really really lousy
Palpataions
Head rushes
Tinnitus
Dizzyness

I still have symptoms but they are no longer acute. They are thankfully and finally manageable xx

 

Thanks very much @Tal

 

Good to hear you are better Tal!

Do you know why you got the medication you got? Based on what tests? As far as I know there is no test for central nervous system overarousal?

If we hypothesize that ME is actually a brain disease (maybe only in a subset), medications for other brain related illnesses could hypothetically work for ME as well. Schizophrenia and bipolar (where the medication you got, is usually taken for) are seen as pretty much biomedical brain illnesses these days.

I always get a bit uncomfortable with the ease that psychiatrists prescribe heavy medication. For some reason you can't get benign medication for most of your severe physical problems without thorough testing and retesting, but the anti-depressants and anti-psychotics are given out like candy, without hardly any testing at all. In this case I'm happy they did and that you got better

 

Thanks to you and all others for your well wishes xx

 

Thanks for your response.

Like I said in my report, you can’t test for CNS over arousal you can only go off the symptoms you tell the doctors. They have worked with the illness now for a very long time. I can’t remember off the top of my head but I think it’s for a least 20 years or so.

Believe me they do not give out things willy-nilly. Based on their long experience and high success rate, they would only put you on medication they believe would help you.

Quetiapin is a medication which primary use is to treat psychosis. But what had been found when taken in a smaller dose it supports the sertraline by making it work better. I was put on Quetiapin for this purpose. It comes in handy that it also calms down central nervous system as well.

I have done a lot of cognitive activity typing my responses out so I’m going to have a rest from it now xx

 

It seems so weird in that case that they are not treating MS, Motor neuron disease, Parkinsons, Huntingtons disease and sharing all their treatments with the world. I'm confused how such treatments would only help neurological illnesses that haven't been diagnosed and only help people with unknown neurological illnesses. It seems counter intuitive that the less known about the neurological illness the more they are willing to treat it and have such amazing results as you are reporting. We don't get the same level of results in those other illnesses above with their chosen treatments.

I wonder why that is.

Interesting.

So how do they decide who to give potentially toxic medications to that may even make people worse?

Or did he mean everyone with the label ME could have different a different cause for their symptom profile. Afteral there are currently upto nine different criteria which could afford someone an ME/CFS label. At the same time, if he diagnosed it as CNS overarousal, then was it still considered a ...."neurological illness that hadn't been diagnosed"?

With 8 beds for the whole country with an estimated 250,000 people with ME? Also take into account not all eight beds are for people with ME.

Do they pre sreen the 'horses' for who they think is most likely to benefit form them bearing in mind the doctor told you this ......"but he said it’s not the case with every single person with M.E because everyone is different".

I think that's your opinion not fact.

That's interesting because pacing and the graded approach are defined as two completely separate things everywhere else with two completely different purposes

Footballers with broken legs don't have any obstacles like neurological diseases to prohibit their recover form their current symptoms which by definition in such an example is purely a broken leg. Unless it was Danny Wallace the ex footballer who got MS and never played again. We could also use the example of the tennis player, Jerome Golmard, who got the neurological disease ALS and died.

I'm not sure the broken leg analogy is the best one.

Its great that you are doing much better.

 

This

 

@Tal
Thank you for continuing to engage with us all here on this forum, and for taking the time to post further information, regards your experiences, in response to questions posed. As I'd noted in an earlier post, I do hope you continue to maintain your improvement over the coming months and years, and are able to get back to a life which is full of joy and happiness, once more.

I also hope that you will be able to accept my following comments and questions in the spirit intended, and also accept that I am in no way seeking to undermine your ME diagnosis, nor invalidate your experiences of your treatment at this clinic. Your treatment plan as you describe above, does raise some serious concerns which should be raised, nevertheless.

Could I ask who originally diagnosed you with severe ME?

Are you able to clarify which additional blood tests were undertaken, to rule out other conditions which would negate the need for further investigations?

Given that one of your major symptoms as you describe in your other thread, was/is chronic and disabling head pain, I would have thought it not unreasonable to at least undertake a MRI to rule out other potential causes, other than 'central nervous system over arousal', on the assumption that you have not had a recent MRI.

and

I am a little confused here .. are you referring to a full dose as would be applied for the primary use of these drugs, or the full dose in the context of the level they wished you to reach, which would be less than that required for their primary use?

If indeed, as you suggest, this doctor is now using an ME diagnosis, that would indeed be progress.

It could also be reasonably assumed that your doctor was in fact conflating an ME diagnosis with another serious psychiatric illness, for which this treatment is recommended, and perhaps this is something you accept also?

As I think implied by @unicorn7 above, it would appear that you have been treated for a serious psychiatric illness, and not ME. Likewise, the use of the drugs to which you refer, are not used, nor are they recommended for the treatment of CFS/ME. Nor am I aware of any trials or publications, for supporting their use in CFS/ME.

If indeed this doctor suggested that they use this treatment for ME patients, then that raises serious ethical issues on so many levels, and should be reported to the relevant authorities. Are you really sure that your 'informed consent' to accept this aspect of your treatment was used to treat ME, and not a serious psychiatric illness?

Wishing everyone improved health and every happiness. John