Mrs Jerseychaz has had a diagnosis of ME/CFS for about 7 years, its taken what appears to be the usual course of some slow improvement over time, acupuncture has helped, the NHS haven’t closing the service here on the IoW and we are now at a point where she keeps “crashing”, recovering a little and then descending in to gloom and despondency again. Its at a point where it is beginning to impact on our relationship and future – we want to move to France but in the current circumstances that seems to be a rash action at the least – she hates me being away overnight and almost seems to resent the fact that I’m fit and healthy – I can understand that it must hurt to see someone close apparently enjoying themselves….when you can’t walk more than a couple of kms without major after effects.

The main problem is that the GP seems to love a diagnosis of ME/CFS – there’s nothing they can do so “off you go and don’t trouble me again”! As I said, Acupuncture seemed to work for a while although whether that was the actual needles or the fact that the therapist is a great laugh is open to conjecture. We tried some CBT privately but that didn’t have a lasting effect. The latest idea to come along is The Optimum Health Clinic who purport to have successfully treated “thousands” of sufferers across the world! There is clearly a cost attached to this approach and we’ve yet to find out how much it is.

We are approaching the end of our tethers and would love to share some experiences with others who’ve been down the same road because it seems as if we are alone in a field populated by wack job quacks who will relive you of thousands for some scented water and a book stating the bleeding obvious!

Thanks for reading this rant, I really needed to get it off my chest.

Chaz

Has she been evaluated for POTS / dysautonomia?
http://Www.potsuk.org
http://www.dinet.org

Also may be worth having a chat with http://www.southcoastfatigue.co.uk.

Perhaps a move to France may be for the best. Give Edukator (on here) a prod about medical services in France as you may get better treatment even though it will cost some money. Better paying and getting some palliative care than free and ignored.

Will send you an e-mail with links a bit later on. 🙂

The main problem is that the GP seems to love a diagnosis of ME/CFS – there’s nothing they can do so “off you go and don’t trouble me again”!

It’s criminal, but it’s a complete get out of jail free card for the entire UK system. Everyone thinks it’s a made up illness, as there’s no official cure, and you’re treated like you’re faking it and should just stop complaining and get back to work… Boils my piss!

Anyway… Suffered for years… First lapse in 2008, second in 2011, since recovering from the second I’ve largely been ok but still have to be careful not to overdo things and still have the odd morning where I wake up like I’ve been hit by a truck (or even better, wake up 3hrs late despite several alarms!). Mostly though these days I live a relatively normal life.

The one thing I would say is that there is no definitive answer. It can be different for everyone. Just because something has worked for someone else, doesn’t mean it will work for your missus. This isn’t another copout, it’s genuinely true. When I was suffering it was at the same time as another friend I already knew from this forum (strangely enough), and we’d share progress reports every so often, and helped each other out somewhat.

For me, three things I can state definitely worked were as follows…

-Seeing a counsellor
-Exercise
-Having a goal to focus on

The counsellor wasn’t cheap, but when you’re banging your head against a brick wall, thinking you’re the only person in the world suffering like you are and that “life is so unfair” (when everyone around you just thinks it’s a fake illness), it makes the world of difference hearing a sympathetic voice, but also one trained to help you be positive and think of ways to turn things around.

The exercise (or lack of it) was killing me. I was dying to get back out on a bike properly, but had to build up to it obviously. But here in lied the next goal… I gave myself a target to aim for, which for me was cycling related, and I started to push myself little by little (being careful not to overdo it each time) until I was where I wanted to be. I can’t undersell the benefits of exercise on the brain as well as the body, it’s a drug but in a good way! The more I got better the more cycling I wanted to do, and I’d say the fittest/fastest I’ve ever been on a bike is probably the direct period after I recovered from my second lapse of CFS!

Remember also though, and this sounds a horrible thing to say, but when some people get ill, they don’t have the mindset or the desire to want to get better. Some people just don’t want to be fixed! If you can find what makes your missus tick so to speak, and get her focussing on getting better, you’re more than half way there…

Email in profile if I can help at all…

I too have an NHS diagnosis, and found a local support group to be a great help. However I became lots better with treatment for something else entirely. YMMV.

A friend of mine had ME for several years. It disappeared when she fell pregnant and hasn’t returned in 20 years.

A friend of mine had ME for several years. It disappeared when she fell pregnant and hasn’t returned in 20 years.

😀 Not an option for us, we’re both 58! And I’ve had the snip…..

Thanks to all who’ve contributed here or by email. Some leads to follow up. I’ll post again about our experiences.

Chaz

Slowoldgit…. what treatment did you see improvements on?

In the Guardian today

Thanks Whimbrel – an interesting read.

Can it possibly be the battle to rid of ME thats perpetuating it?

The example above when someone got pregnant – mayby their attention switched from ME to the baby and the ME went away by itself when interest was lost in it.

Before dismissing it, since diagnosis how much time has been spent looking for cures. Id try acceptance and see if it cures by itself.

I understand the symptoms are bloody horrible as i had them when i had anxiety disordet.

^ 😯

Search on google for a girl called loz evans, she has a free book on how she recovered from CFS.

I know how awful the bodily symptoms and thoughts are, as i had them really bad with anxiety and i battled and researched that for a long time. Went to a&e twice in an ambulance. But it made me worse.

The choice is always yours what path you want to take but at least take advice from people who have recovered.

@zzrmatt

This was about ten years ago, I never updated it…

Lyme Disease – everything you wanted to know (and stuff you wish you didn’t)

… I had about 2.5 years total on ABs paid for privately, the GMC then shut down that particular route. If you’re interested, look up John Caudwell on FB, he’s fighting for better treatment of LD patients. And he happens to be a multi-millionaire with a very sick son.

I believe CFS / ME is very much a dustbin diagnosis, sufferers with a range of symptoms that could have one (or more) of many causes. If your cause is infection, no amount of graded exercise and/or positive outlook is going to make much difference.

Thanks for reposting that thread slowoldgit, it’s obviously still very much relevant and I’d definitely be interested in seeing an update. Perhaps along the lines of what you’ve learned on your journey, debunking myths etc.

This may be of interest to some, other conditions are discussed and not just Lyme, it’s free but you need to register. I managed to catch one talk yesterday and learned something.

http://www.chroncilymediseasesummit.com

Currently reading this book by Dr Neil Nathan which is a wealth of information on chronic fatigue, fibromyalgia, persistent pain and other chronic illnesses. Patients from the UK travel to the USA to consult with him and have heard of good results:

https://wordery.com/healing-is-possible-neil-nathan-9781591203087

c_g – I accept your point, but so much has changed in the ten years since, it would be misleading to offer my experience*. There are new concepts like stealth pathogens, biofilms, Alzheimers, which my old and Lyme-addled brain can’t keep up with. See the Grauniad linky above.

*Except that long-term ABs worked. One-at-a-time the symptoms fell away, even surprising ones that I assumed were normal stuff, like heartburn and funny fingernails: I should have kept a diary. So the infection was all over me, but the test didn’t find it.

My Doc got stamped on by the GMC for the crime of actually making people better, as did the few others who treated we Lymies.

The current awareness and future progress is on FB thanks to John Caudwell. He’s organised the collating of data which should put some numbers onto what LD has cost the country. Anyone with a pos. test result should get on there. If he goes quiet…

PS: Anyone with more recent experience is welcome to add an update.

slowoldgit – yes, understand what you’re saying but, as far as the NHS is concerned, nothing has changed in that time. In hindsight a diary would have been helpful for monitoring as well as assisting the researchers.

Yes, John Caudwell is doing a sterling job of pushing the Government to open its eyes about this disease. Did notice that his Facebook page has gone quiet, is that what you were inferring in your comment?

I personally would like to see research into those of us with an autoimmune condition who’re now being diagnosed with Lyme. It has been noticeable that this is happening increasingly frequently on the UK thyroid forum I use.

Going back to your point about Lyme-treating doctors, isn’t it sad that these people have to work ‘underground’ for fear of reprisals?

I’m now under an American doctor, he came to the UK recently to hold consultations with people like me whose health is deteriorating and have found NHS doctors to be useless. He’ll be returning shortly due to patient demand.

Sorry, my posts are a bit rambly these days. 😳

I think JC’s page has gone quiet because they’ve been in contact with LD-sufferers with Pos NHS tests, and they’re working on the data. Plus he has a sick family to care for.

Personally I felt they should have a second subset, those denied UK treatment by a Neg test. Then maybe run blood tests (microscopy and the state-of-the-art stuff done abroad) on both groups to see how they compare. They chose the Pos tests because that left no room for dismissal: self-diagnosis, that sort of thing. Maybe they can do the others later.

If he stays quiet, it’s time to worry.

There’ve been a few threads over the years on here, some have had helpful things here and there so it’s worth digging through. My wife’s been through some tough times but at the moment it’s under control. Past experience tells us it’s not gone for ever though so we need to stay on top iof it

http://singletrackworld.com/forum/topic/post-viral-fatigue-recovery-suggestions
http://singletrackworld.com/forum/topic/post-viral-fatigue
http://singletrackworld.com/forum/topic/chronic-fatigue-syndrome/
http://singletrackworld.com/forum/topic/chronic-fatigue-syndromea-year-on

I note that you’ve posted on some of the threads so maybe not that helpful per se, sorry to hear things are not looking better

slowoldgit – ah, thanks for explaining about John Caudwell.

Yes, a second subset is a good idea but don’t know what a Pos test is. My blood was sent to the USA for comprehensive testing, I don’t see any point in informing a GP of the results or diagnosis. In fact the private phlebotomist said she’s being kept very busy with Lyme testing.

Pos or Neg ELISA tests are used to confirm or deny LD infection respectively, despite symptoms. One finger typist here, sorry. Your private phlebotomist is in the UK, presumably?

slowoldgit – sorry, my brain’s gone dead from too much reading. 😳 Yes, I understand now so thank you for explaining. Private phlebotomist is in the UK and my private doctor is based in the USA.

There’s been some fascinating research from the USA concerning mold, not easy to treat either.

A bit late here. Sorry to read about your wife jersychaz.
I’m nbt’s wife and as he says above am now on top of what was a 5 year period of cfs.

I found that very much like mboy above, was the need to find a goal. This was in the form of an mtb race which I was determined to take part in, even though I hadn’t been able to ride a bike for ages. It gave my mind something to concentrate on and a drive. Just little steps, or in my case mtb rides at a time and I got some fitness. This was helped by eating snacks all through the day instead of the normal 3 large meals that most people have. This almost hourly eating of food helped keep my energy levels up.
In winter I was constantly cold and coming down with different lurgys. The food helped build my immune system back up (this took a few years though).

I couldn’t ever understand why anybody wouldn’t want to be well if they suffer from this. One certainly doesn’t get any sympathy and almost disdain in some cases.
A friend was dropped because she thought people who had CFS were lazy and didn’t want to work.

I suggest you both sit down and find a goal for your wife to aim at. Maybe the Move to France with a new home to concentrate on will help. Its worth a try.
Good luck.