Good news for CFS

Thanks for posting, Beverley. I'm totally confused as to how any supposedly scientific data, like the PACE statistics, could be blocked from being released. The very basics of any scientific information or protocol is that it should be peer reviewed and replicated. Without that, it is simply garbage. Also, it is very suspect that they've been blocking the release of the statistics for, I believe, 5 years! With all of this, how can the NHS possibly go ahead and continue recommending Graded Exercise Therapy (GET) and Cognitive Behavioral Therapy (CBT)? Especially since so many people, myself included, have been made worse by GET? This is a total mystery to me. I wonder if I'm missing something here.  

Hi Jackie,

It seems a shambles since the pace trials started. At the real heart of all this is the need to save money. Before my condition started, I worked in mental health and worked alongside cbt practitioners. The Nhs followed NICE guidelines and cbt was the main therapy used. However, I was not a cbt practitioner and my "results" were no different to those who were. I strongly believe that what does help is being truly heard, acknowledged and prized for who we are and not judged for our short comings. Cbt is a useful therapy. But not for all. At the cfs/me clinic I attend, I have a specialist nurse who I feel "gets" me. Yes, it's time limited and uses Cbt techniques but, also looks at relaxation, mindfulness and our personality traits. No GET. Pacing is advocated. Looking at sleep and activity levels investigated and solutions offered. I know I've had a much better experience than some with the service. My friend with cfs/me actually put In a complaint about how she was treated (had telephone sessions after her specialist nurse went on long term sick, new one sent report to the doctor with inconsistancies and ridiculously kept saying they were tired too! What a lack of empathy and understanding of the condition)

With regard the pace trials, the original protocols were changed which showed 61% improved whereas the original showed only 21% were improvers. Shocking disparities in the data and like you many people, made worse as a result of this. If you look on the #meaction release about the pace trials yesterday, there is alot of information regarding the data.

Hopefully some good will now come from all of this.

Beverley

I totally agree with what you say about CBT--that what really helps is being truly heard. I worked with a CBT therapist for a few years. Looking back, it wasn't the CBT that helped, but the compassion and understanding of the therapist. By the way, I live in the U.S., and so of course am not locked into any kind of national health protocol that advocates CBT and GET. However, many doctors here, including specialists who should know better, still believe in graded exercise or more exercise than is probably safe for ME/CFS patients. These doctors may have been influenced by PACE guidelines. Or perhaps they're just ignorant. I have no idea why my specialist, when I first became ill, put me on his exercise program in a nearby gym. He had me do aerobic exercise on a treadmill. He is a top rheumatologist in the Los Angeles area. I eventually collapsed because of trying to do too much, in general. If any of the specialists I was seeing then, at the very beginning of my ME/CFS, had taken a few minutes to explain to me the importance of rest and pacing, I might not be in my current housebound situation. That's why I post here to share my experience with others.

I got that advice--the exercise bit--years ago.  I'm glad I had done a bit of reading on CFS and figured the doctor was full of it and listened to my gut.

I still run into medical people who think CFS is not a physical illness but an emotional disorder.  An offshoot of depression.  Aaargh! 

My doc told me to exercise twice a day at least 20 min each time. That wasn't a good idea. I was down for a couple weeks. 😞 His solution to that problem was to double up on my med. I'm currently trying to find a different doc that had dealt with cfs.

Hi Jackie,

I know there are some differences in the US and some for the better in some states. There is such differences in how CFS/ME is approached that it's hard to know what's going on. Some have to see a psychaitrist, some a rheumatologist and some infectuous deseases or a neurologist ! 

The resting and pacing seems the only thing any of us can do. I was told to find my base line:where I can start to do more. I've yet to find it as we aren't perfect lab experiments and life has us needing to do things that overwhelm the energy stores constantly. I wish we all had the chance to go away for a month and have all our needs taken care of and all the nutritional beneficial foods, treatments and stimulus we need with this condition to make us better. 

I went to the gym before I knew I had this but had the symptoms and feel that same exhaustion now, today, when I've not even left the house ! With this new research lets hope there is some help and hope for us.

A seperste line of research here in the UK is looking at how bacteria in the gut is showing this but, it is sure showing that there's research into the condition going on : )

How long have you had this Jackie? 

Beverley

I've had ME/CFS for over 15 years. The first two doctors I saw told me (surprise!) it was all in my head. I knew they were wrong, and saw a specialist at UCLA who almost immediately diagnosed me with this illness. So I was very lucky in that I got diagnosed about 3 or 4 months after I became ill.

Was yours after a virus? I know so many people get this that way. 

It took me a at least a year to get a diagnosis, but I know some people spend several years trying to find a doctor who will listen to them and take them seriously.

Yep. I had a virus and was stressed about another medical issue at the same time. I'm sure it was the combo of both that was just too much for my system.

Yes, it takes many people years to get a diagnosis. How sad! I read that ME/CFS is taught in a relatively small percentage of medical schools in the U.S.

Hi Jackie,

Double whammy, awful. I'm guessing you were active before too? I guess at least you got a diagnosis early on although its cold comfort. Do you have supportive family and friends and GP? I think that is a major part of managing this condition well. I don't always get the help I need and It's taken people a long while to get used to the fact that I'm not 'back to normal' yet. as if it's not enough just living like we have to. 

I've had doctors for years tell me I need to change my eating habits and lose weight. I only eat what I grow. Sometimes red meat for protein. I finally had a melt down in the doctors office and that's when they did other tests to tell me I have cfs. Then they still told me to change my eating habits and lose weight and that would make me feel better.

Yes, I was very active before getting ill. I was a technical editor at a research firm, working with a group of scientists. I also edited and co-wrote two computer science books with my husband. In addition, we worked closely with an architect, designing and getting our house built. I'd traveled to many other countries. Regarding support, well, my husband is very supportive, and that's about it. I arrange care for my 95-year-old mother. My husband's family is not supportive, and most of my friends have faded away. My ME/CFS specialist, an infectious disease doctor, is quite wonderful. How long have you been ill? What was your life like before?

Hi Jackie,

Wow, sounds an exciting life you were having up to this. I'm so glad to hear your husband is supportive. It's a shame his family isn't. It really opens your eyes to other people's behaviour this condition.

I've been like this for four years now. I was self employed, a busy mum of four with a new contract to work in mental health with school children. I was stopped in my tracks. Luckily I still have supportive (ish) friends but no one there on a daily basis apart from the children. It changes all your relationships having CFS/ME. I hate relying on people.

What would you do if you had a day cfs/me free?

Beverley

What would I do if I had a day ME/CFS-free? You mean, after I'd kissed the ground in gratitude? I'd go to a well-known Japanese restaurant in L.A. with my husband and have their 13-course dinner. (This place was featured in an episode of "Chef's Table" on Netflix.) What would you do?

Besides taking a really long walk with my dog?  I just don't know.  It's been too long.  Go to the store, take my time and not have to hang onto the cart,  and stack up on groceries?  Get some gardening done?  Probably the long walk with the dog.  At least, that would be the first thing on my list.  How sad that I can no longer think of anything truly amazing that I would do.  One day wouldn't be enough.  But the long walk with my pooch would be great.  And I would take off the GPS monitor I'm supposed to wear so that I could enjoy that sense of freedom!

That sounds a lovely treat Jackie, I'd go for a really long walk in the lake district. Get back to where we were staying and have a long soak before sitting in a chair In front of an open fire with a drink in my hand. Content as a kitten and justifiably exhausted : )

If only Santa really existed, that would be on my list

Hi Phyllis,

I think it's these lovely simple things that mean alot. We both miss walking, things that were taken easily are so hard now. But, I truly hope we can all enjoy these simple pleasures again.

Beverley

Can I come too? I hear the lake district is beautiful.

You sure can and yes its beautiful : )