Please can you help? We are desperate!

[Myrtle]

Can anyone tell me where the best CFS treatment facilities in the world and the UK are?
My Mum was diagnosed with CFS approximately 22 years ago, her condition is now very severe.

She can no longer talk above a whisper (which she can only do a few world's at a time twice a day), walk more than a step, tolerate light/ sound or thinking.
She is currently in hospital after a very serious suicide attempt a week and a half ago.

We need her to be thoroughly reassessed as the last time she was tested was over 20 years ago. She had Seretonin Syndrome around 5.5 years ago which has left her brain chemistry in a terrible state but no one seems to be qualified to test her.

There is a definite genetic component to her condition at 6 members of our immediate and close family are I'll with this.

We desperately need help, if anyone can help us in anyway with contacts, information or professional help please please please post on this thread or contact me via here.
Thank you for reading.

 

[WillowJ]

You might contact the 25% ME group for advice and suggestions.

I am sorry things are so difficult and hope you get some help for your mum.

 

[JaimeS]

I just saw Kenny De Meirlier, who has offices in Brussels. I think he would be very helpful, and he got me in to see him in two weeks.

The CFS Roadmap contains a lot of information, including doctors and what their specialties are. It has a section for physicians in Europe and the UK. This information is towards the end, so feel free to scroll really fast past all the information, but keep the file. Sit down with it again when you believe you may have a few uninterrupted hours to examine it. It's an invaluable resource.

I'm so sorry you're going through this. We here are all on your side.

-J

 

[Folk]

Darling I don't think there's any doctor in the UK that can help, or at least that's what I'm used to see. UK seems to be one of the worst places to have ME/CFS (and I'm speaking from Brazil where doctors never even heard of the term "ME" and CFS just means you're tired).

There's Dr. De Meirleir from Belgium. His aproach is a bit controversial, but he's very praised here on the forum. He has a 3 month waiting list (last time I checked) but perhaps you could arrange something if you explain the severity of the case.

There's also doctors that do Skype consultations like Dr. Enlander. His waiting list isn't that long.

Hope this helps.

 

[Myrtle]

Thank you @Folk for your reply.

Does anyone know of the best diagnostic doctor/ hospital in the UK as well. My Mum hasn't been tested for 20 years and we need to see if she has something other than CFS.

Thanks again.

 

[JPV]

UK Dr recommendations?

 

[Sasha]

So sorry to hear how ill your mum is, @Myrtle.

At the Newcastle ME/CFS unit, run by Prof Julia Newton, they have a doctor who is supposed to be thorough in determining whether a patient referred to the unit really has ME or something else. Newcastle published a paper showing that about 40% of the patients referred to them didn't have ME. The doctor's name is Dr Gavin Spickett and his details are on this recently-updated MEA list. Your mum's GP should be able to refer you even if she lives outside the Newcastle catchment area:

http://www.meassociation.org.uk/nhs-specialist-services-throughout-the-uk/

It's important not to walk blindly in to any of these specialist ME/CFS NHS centres without knowing what approach they take to ME, as the note on that page says. If you google here on PR for Dr Gavin Spickett, you should find some info about him.

 

[justy]

1.Breakspear in Hemel Hempstead - waiting list of about 3 months, people recommend Dr Puri over Dr Monro, but it is private, expensive and she would need to attend an appointment in person. I know a lot of people don't like them and I also know a lot of people who have been helped by them.

2. Dr Enlander - travels to London from New York occasionally and can do Skype consults - I don't know how successful he is but he look good to me - not sure of costs.

3.Dr. Kenny De Meirleir in Brussels - 3 month wait list, then 3 months to get all tests and plan back (approx.) need to be able to get to Brussels for appts. If he finds chronic Lyme etc then iv anitbitoics need to be carried out in Brussels - some patients manage with distant treatment but others don't. He is my Dr.

if your mum cant travel then KDM is out really - although he has a great deal of expertise, as does Dr Enlander. Breakspear can be the best bet in the UK for real testing and treatment.

You will need to begin with a t least a few thousand pounds in hand for any of these docs tests etc. I don't know about Enlanders charges or tests. Breakspear is more expensive by far than KDM, but if you factor in travel and accommodation may not be much better. Occasionally people may get some breakspear paid by NHS.

If I was going ti alone I would want to get blood drawn first for Lyme and co infections (Armin labs Germany?) and viral infections and see what that throws up. Trying to do private tests and then asking GP to treat will probabaly be a dead end - NHS wont support private overseas test results no matter what they say.

I also have M.E in my family and it turns out I also have EDS type III and mast cell activation EDS is hereditary and mast cell issues are common in EDS, both these things have been diagnosed after many years by NHS, but they don't give a damn about treating me or following me up, despite these conditions causing some serious issues.

KDM has found me to have Bartonella and Chlamydia Pneumoniae with possible Lyme (bacterial infections)

Please keep us posted on how your mum is doing - she is so lucky to have you to do this for her.

 

[taniaaust1]

Very sorry to hear about your mother. At one point I was in a worst state then what you have described here with your mother but I want you to know I actually ended up having a remission quite a few years after that for a while. So there certainly still is hope for her.

She is currently in hospital after a very serious suicide attempt a week and a half ago

That is very concerning as with my experience of this, it makes my ME worst, hospitals are very bad places for me to be due to the lights, noises, nurses perfumes etc. It is likely to make both her ME and her mental health worst.

I've tried to commit suicide due to my ME and ended up in hospital due to this in a psych ward but ended up having to get myself discharged though I was in a bad way and needed help due to it making my ME worst. If I had stayed, I would of ended up in a complete bedbound state long term again.

She had Seretonin Syndrome around 5.5 years ago

One ME/CFS study showed that people with ME/CFS had high serotonin not low. So anti-depressants can be dangerous for some of us.

Can anyone tell me where the best CFS treatment facilities in the world and the UK are?

Unfortunately in UK there isn't good ones and whatever one she goes too could make her worst. There is two people I've followed on these forums (with another posting for them) in which have been detained in England in hospitals due to having severe ME. These people have been detained without being given ANY ME treatment and while there their ME and the issues around it were ignored.

This has caused great damage to them, one since has been put into a home for those who have mental issues , while the other has been actually left brain damaged at this point and can no longer speak and now cant even recognise family members due to from the abuse of care. (If I could think where the link is here I'd post it). These people spent 1-2 years in mental health place and it didn't help them at all.

The best way to care for your mum with how she is (she certainly couldn't cope with travelling long distance if she's' that bad) is probably for a family member who understands this illness to be taking care of her as her carer. Has one of you been doing that? She probably should be having very little stimuli if she has bad ME as its damaging eg very little talking to her etc. Those trying to help can be doing much harm if they don't understand what its like.

I believe the only reason why I recovered from that severe state is cause I could control my environment.. eg my children used to leave water and food by my bed and I'd have complete peace and quiet in the dark room, they'd do everything.. and I just stayed in bed all the time (well I couldn't walk so I couldn't do anything else). I used basic sign language as I couldnt often talk. Sometimes I slept as if comatose for 3 days and nights at a time without waking (I came close to dying). I ate only once a day with my fingers due to the effort involved in feeding myself.

Has she got a wheelchair? (If she hasn't Im surprised she don't.. many of us including myself do have wheelchair, they can not only prevent a collapse but also keep ones activity level down to help avoid worsening).

I agree that your mum probably should have health tests seeing its been 20 years without any but not sure if the hospital environment is the best place for her even for that. (Ive at times had the blood nurse come to my home to get my blood for testing. I wont get some tests done as its too dangerous for my ME level).

As willow suggested, I too suggest to contact the 25% ME group (or Skype consult with one of the worlds ME experts), your mum if it is severe ME causing her issues, she really should be dealing with those who are used to severe ME patients. Getting advice from others may be harmful and could end up getting her locked away for a very long time with no help for her ME. (I wish I knew where the other link was so you could read it and see just why you need to be being very careful when seeking help for her).

Please let us know how things for your mother go. Best luck. I really wish people managed to get the help BEFORE they get to this point as at this point things are very restricted what can be done. I hope your post serves as a warning to others who delay trying to seek more help sooner. It can get so nasty and once one is bedbound or completely incapable, one can no longer even seek the help let along get places to get it.
.............

With her only being able to talk a few words only twice a day.. I suggest to instead of speaking to use basic sign language with signals you'd both understand, its far easier. The effort to get the right word when ones brain is like this is HUGE and probably more of an effort then she should be making. When I was bad I found there was very little things I needed to sign for, food, drink, empty potty(I used to just point to it, pointing was my main way of communication)...

ps all.. Is the UK ME/CFS specialist Dr Sarah Myhill still helping ME patients?

 

[ukxmrv]

It's a horrible and desperate situation in the UK for people with ME. Over the years many of our experienced doctors have been driven out of the country, retired or stopped treating patients. There are "CFS/ME clinics" but they are not geared up to helping the severely ill and even for mild and moderate patients they can be of little use.

I'm so sorry Myrtle, that your mother has been driven to a suicide attempt and really sympathise with her and the rest of the family. It's a tragedy and injustice that she has been left to suffer like this when we have a NHS.

One doctor you could consider would be Dr William Weir. He's does home visits in many cases and although he doesn't offer much at all in the way of treatment he was very helpful to me in dealing with my GP to get the best out of the NHS that I possibly could. He is respected as an ex-NHS doctor. It may be that he could help with getting the serotonin syndrome and aftermath investigated. Dr Weir is in London but he does travel to see patients even in Ireland.

If you are in Surrey Dr Bansal could be another alternative.

There are other useful UK doctors mentioned in this thread here plus their contact details.

http://www.thegracecharityforme.org/guidance.asp