Chronic Fatigue Syndrome /ME

Mr Slow

I've finally been diagnosed and am getting treatment, initially I felt great but am currently going through a rough patch (I was advised this would happen), even though I feel unwell at the moment I am feeling stronger and mentally sharper. The technique is called 'The Perrin Technique' and there are 2 practitioners in Ireland. When I felt good I was amazed at how my attitude went from survival mode to positivity and I was really motivated with a can do attitude.

If you're suffering just take a look at the website, I really feel like I'm on the way back.:)

nickintime

Hi Mr Slow,
I have just been assessed using perrin technique. I would be very interested to know how you are getting on now after a couple of Months treatments?
all the best,
Nick

RubyGirl

Mr Slow wrote: »

I've finally been diagnosed and am getting treatment, initially I felt great but am currently going through a rough patch (I was advised this would happen), even though I feel unwell at the moment I am feeling stronger and mentally sharper. The technique is called 'The Perrin Technique' and there are 2 practitioners in Ireland. When I felt good I was amazed at how my attitude went from survival mode to positivity and I was really motivated with a can do attitude.

If you're suffering just take a look at the website, I really feel like I'm on the way back.:)

Looks good, where do you get it done?

Mr Slow

nickintime wrote: »

Hi Mr Slow,
I have just been assessed using perrin technique. I would be very interested to know how you are getting on now after a couple of Months treatments?
all the best,
Nick

Hi Nick,

I'm heading for 5 weeks in I think, so far so good. The vegepa supplement starts working within a few weeks, I'm mentally sharper and my mood has dramatically lifed. Twice so far I've done too much too soon, it sets me right back temporarily (3/4 days) I've felt much stronger up to last week and I'm having a weak week this week. I have a session tomorrow and I understand the treatment is tailored week to week depending on your progression. Long story short, it's working, slowly but surely I feel more like the old me. PM me if you want my email address and I can keep you updated, I'd love if there was someone a month ahead of me with the same category number (6) so that I could see that a lift was on the way.

Conor

RubyGirl wrote: »

Looks good, where do you get it done?

www.willowsclinic.com

nickintime

Thanks Conor, Good to hear you are getting on better than before treatments. It is such a frustrating illness..up and down like a proverbial you know what!!! Yeah would be great to hear how you getting on over the next few Months. Not sure what you meant be PM but if you can please share your email address. I am a (5) so will see how it goes....however I have been with a Dr Patrick McGovern (Drummartin clinic) for almost a year and I am much better than last year. It would be great to be able to share how things are progressing and what has helped or not. I have 2 small kids 4 and 1 so it is hard at times. Anyways will say more when we have email addresses.
Fair play for replying,

Nicky

Mr Slow

nickintime wrote: »

Thanks Conor, Good to hear you are getting on better than before treatments. It is such a frustrating illness..up and down like a proverbial you know what!!! Yeah would be great to hear how you getting on over the next few Months. Not sure what you meant be PM but if you can please share your email address. I am a (5) so will see how it goes....however I have been with a Dr Patrick McGovern (Drummartin clinic) for almost a year and I am much better than last year. It would be great to be able to share how things are progressing and what has helped or not. I have 2 small kids 4 and 1 so it is hard at times. Anyways will say more when we have email addresses.
Fair play for replying,

Nicky

Hey Nicky, PM is Private Message and I just sent you one!

nicolas1501

Hi Nicky, I was wondering if you could let me know if the drummartin clinic is any good? I have been suffering of CFS for the past 4 years now and I'm living a nightmare. I have seen many specialists and I am frustrated of not getting a proper treatment.

Also is the Perrin technique worth it? It is pretty expensive and I am struggling with money but if you guys had a good experience and recommend it I might try to book an appointment.

Cheers.

AlarmBelle

Mr Slow wrote: »

Hi Nick,

I'm heading for 5 weeks in I think, so far so good. The vegepa supplement starts working within a few weeks, I'm mentally sharper and my mood has dramatically lifed. Twice so far I've done too much too soon, it sets me right back temporarily (3/4 days) I've felt much stronger up to last week and I'm having a weak week this week. I have a session tomorrow and I understand the treatment is tailored week to week depending on your progression. Long story short, it's working, slowly but surely I feel more like the old me. PM me if you want my email address and I can keep you updated, I'd love if there was someone a month ahead of me with the same category number (6) so that I could see that a lift was on the way.

Conor



www.willowsclinic.com

I understand it is massage. Is it gentle massage or painful? And I think I read 150 for the first session and 50 thereafter?

kangaroo

nicolas1501 wrote: »

Hi Nicky, I was wondering if you could let me know if the drummartin clinic is any good? I have been suffering of CFS for the past 4 years now and I'm living a nightmare. I have seen many specialists and I am frustrated of not getting a proper treatment.

Also is the Perrin technique worth it? It is pretty expensive and I am struggling with money but if you guys had a good experience and recommend it I might try to book an appointment.

Cheers.

Lots of things can help a bit in ME or CFS. However, if you're expecting it to, say, improve your employment status e.g. go from being not able to work or only part-time to full-time, I'd guess the chances with this are low. Also, if you are getting an insurance payment, don't forget you may need to spend money going to a doctor privately, possibly pay for tests that show something abnormal and maybe even pay a lawyer, to hold on it. Sometimes people can be cut off State disability payments also (although with a fight one can often get back on them). I don't know your circumstances (you don't have to say), but I think it's best with this illness to keep a bit of money for a rainy day.

Mr Slow

nicolas1501 wrote: »

Also is the Perrin technique worth it? It is pretty expensive and I am struggling with money but if you guys had a good experience and recommend it I might try to book an appointment.

Cheers.

I'm now heading for week 9 and feel much more like my old self, the toxicity is gone, I'm far from bursting with energy but I can do most things at an easy pace. I spent the weekend in London and had to carry my 5 year old quite a bit, I was wrecked when we got back to base but there was no energy crash and no need to stop and rest along the way. Perrin works - the person that put me onto it went from spending 18-20 hours a day in bed to working full time in her business but it does cost. The way I looked at it was that I would 'invest' €700 in 3 months treatment, if I saw no signs of improvement I'd leave it, after 3 months, I was a 6 on the scale, after 3 months my treatments will be reduced to once a fortnight and obviously the cost will half. Even if you don't opt for treatment I would recommend taking VegEPA 70 build up from 2 to 8 over a month, they will help you feel mentally better and that really helps in fighting the physical symptoms. It also improves the mood making dealing with people much easier.

AlarmBelle wrote: »

I understand it is massage. Is it gentle massage or painful? And I think I read 150 for the first session and 50 thereafter?

It's not painful at all, in my case in the first 5/6 weeks I would get sick after treatment and feel very toxic, I now feel better after treatment and actually look forward to it as I find the head massage very relaxing.

kangaroo wrote: »

Lots of things can help a bit in ME or CFS. However, if you're expecting it to, say, improve your employment status e.g. go from being not able to work or only part-time to full-time, I'd guess the chances with this are low. Also, if you are getting an insurance payment, don't forget you may need to spend money going to a doctor privately, possibly pay for tests that show something abnormal and maybe even pay a lawyer, to hold on it. Sometimes people can be cut off State disability payments also (although with a fight one can often get back on them). I don't know your circumstances (you don't have to say), but I think it's best with this illness to keep a bit of money for a rainy day.

What's your background with this? The Perrin Technique is on the verge of being adapted by the NHS in the UK as 'the' treatment for CFS, ME and Fibromyalgia, saying it won't help greatly is unhelpful IMO, it won't cure someone with 30 years suffering but it will still help.

mally123

Can anyone let me know if there is a consultant based in Dublin who diagnoses ME/Chronic Fatigue.:rolleyes:

kangaroo

Mr Slow wrote: »

The Perrin Technique is on the verge of being adapted by the NHS in the UK as 'the' treatment for CFS, ME and Fibromyalgia, saying it won't help greatly is unhelpful IMO, it won't cure someone with 30 years suffering but it will still help.

I very much doubt that: the UK uses NICE NHS to recommend what the NHS should pay for. It requires at least two good-quality randomised controlled trials to be positive, and will generally look at cost-effectiveness. There isn't that sort of published evidence for it.

Also, CBT and GET have the required evidence for ME/CFS*, and have lots of professionals within the system offering it, so could see them fighting any suggestion that the Perrin Technique would be "the" treatment for ME/CFS.

*not that I'm convinced myself

Mr Slow

kangaroo wrote: »

I very much doubt that: the UK uses NICE NHS to recommend what the NHS should pay for. It requires at least two good-quality randomised controlled trials to be positive, and will generally look at cost-effectiveness. There isn't that sort of published evidence for it.

Ray Perrin has run one trial at least with Birmingham University documenting treatment of 15,000 patients. He's currently in the US talking to a university that may have developed a method of scanning for lymph in the brain, if he can prove that lymph passes the blood brain barrier he'll have proven the current medical fraternity wrong and can then prove beyond a doubt that his technique really works. Dismiss it if you wish but it's working for me and thousands of others, I no longer supplement my energy levels and have returned to training, my proof that it works will be when I break 20 mins for 5k next year without I'll effects, i'll be back here to post my result. :-)

kangaroo

This is what was on the Perrin Technique in the material relating to the last time NICE guidelines were published on "CFS/ME"

http://www.ncbi.nlm.nih.gov/books/NBK53572/
Appendix 1
Systematic Evidence Review to support the development of the NICE clinical guideline for CFS/ME in adults and children
Anne-Marie Bagnall, Susanne Hempel, Duncan Chambers, Vickie Orton, and Carol Forbes.

Centre for Reviews and Dissemination, University of York, October 2005

[..]

Massage therapy improved measures of fatigue, pain and sleep, depression and cortisol levels in one small RCT in those diagnosed with chronic fatigue immune deficiency syndrome (CFIDS).198 Osteopathy also reportedly improved measures of fatigue, back pain and sleep, anxiety and cognitive function and general health in a controlled trial of patients diagnosed with ME. However the quality of this study was poor (score = 0 out of 20).199

199. Perrin RN, Edwards J, Hartley P. An evaluation of the effectiveness of osteopathic treatment on symptoms associated with Myalgic Encephalomyelitis. A preliminary report. J Med Eng Technol. 1998;22:1–13.

I'm not sure there have been any randomised controlled trials published since then.
So I remain very sceptical of claims such as:

The Perrin Technique is on the verge of being adapted by the NHS in the UK as 'the' treatment for CFS, ME and Fibromyalgia,

Mr Slow

kangaroo wrote: »

This is what was on the Perrin Technique in the material relating to the last time NICE guidelines were published on "CFS/ME"


I'm not sure there have been any randomised controlled trials published since then.
So I remain very sceptical of claims such as:

You're entitled to your opinion of course and appear to be well read on the subject, all I can really offer is that it works for me and 1,000's of others that I've connected to through Facebook as well as those I've met and spoken to in The Willows Clinic. It would be a shame if your scepticism put someone who could be helped off.

kangaroo

Mr Slow wrote: »

It would be a shame if your scepticism put someone who could be helped off.

Similarly, it would be a shame if your enthusiasm meant somebody spent money on it they couldn't afford and it didn't make a large difference.

Mr Slow

kangaroo wrote: »

Similarly, it would be a shame if your enthusiasm meant somebody spent money on it they couldn't afford and it didn't make a large difference.

As I said before I took a chance on it and it has worked out, I've probably spent more in the last year on supplements and the like trying to synthesise energy and general well being, I don't need any of those anymore

AlarmBelle

kangaroo wrote: »

Similarly, it would be a shame if your enthusiasm meant somebody spent money on it they couldn't afford and it didn't make a large difference.

you should declare your position with the irish me/cfs association

robinph

AlarmBelle wrote: »

you should declare your position with the irish me/cfs association

I see no reason in this thread for anyone to need to declare their position.

LegacyUser

Hi OP, great you found something to help you.

I know someone who did this for a few months and it didn't help them unfortunately, so I suppose if someone were tryng this (or any other treatment) they might want to consider what money they could afford to lose in case it doesn't work, or only helps a bit. This is what I try to do anyway when considering trying any treatment. Of course if something helps then I try to evaluate after a time whether the benefit is worth the cost of ongoing long-term treatment (sometimes it is and sometimes it isn't depending on the degree of improvement from the treatment).

There are not a lot of trials on treatments for ME/CFS, and responses to treatment seems so variable, so anything is a bit of a gamble.

I usually try to decide in advance how long I might try something for (usually I try a minimum of a few weeks, but it depends on what the treatment is and whether I am having a bad, neutral or good reaction), and how much money I can spend before stopping if it not having enough of a positive effect. I try to stick to that as much as possible. Though it can be hard not to keep trying something once it is started.

I have literally spent thousands trying things out (I would say possibly in excess of 20,000 Euros, I'm afraid to count it (!) - I have been sick for over a decade) only to find in the end that rest, pacing, getting a mobility scooter, and sleep medications were the things that helped me most. I tired accupuncture years ago and I remember thinking in the end that the money I was spending on that would be better spent on things to help me pace better, such as taxis instead of overdoing it trying to walk to things.

Anyway this treatment seems more rational that some things so it might be worth a shot, but it looks like it won't work for some so it is worth bearing that in mind as well.

AlarmBelle

Mr Slow wrote: »

Ray Perrin has run one trial at least with Birmingham University documenting treatment of 15,000 patients. He's currently in the US talking to a university that may have developed a method of scanning for lymph in the brain, if he can prove that lymph passes the blood brain barrier he'll have proven the current medical fraternity wrong and can then prove beyond a doubt that his technique really works. Dismiss it if you wish but it's working for me and thousands of others, I no longer supplement my energy levels and have returned to training, my proof that it works will be when I break 20 mins for 5k next year without I'll effects, i'll be back here to post my result. :-)

Do what you think best for yourself and ignore negativity. keep us posted on how you get on

AlarmBelle

kangaroo wrote: »

I very much doubt that: the UK uses NICE NHS to recommend what the NHS should pay for

http://www.theperrinclinic.com/
Research Raymond Perrin's research at the University of Salford in conjunction with the University of Manchester has provided strong evidence that an important component of CFS/ME involves a disturbance of lymphatic drainage of the brain and muscles. The novel osteopathic treatment developed by Raymond Perrin has been statistically validated in both clinical trials, emphasising the need to focus future research on the biomechanical aspects of this disorder. Raymond has expanded our knowledge of CFS/ME, which led to a doctorate awarded by the University of Salford.

kangaroo

AlarmBelle wrote: »

kangaroo wrote:

I very much doubt that: the UK uses NICE NHS to recommend what the NHS should pay for

http://www.theperrinclinic.com/
Research Raymond Perrin's research at the University of Salford in conjunction with the University of Manchester has provided strong evidence that an important component of CFS/ME involves a disturbance of lymphatic drainage of the brain and muscles. The novel osteopathic treatment developed by Raymond Perrin has been statistically validated in both clinical trials, emphasising the need to focus future research on the biomechanical aspects of this disorder. Raymond has expanded our knowledge of CFS/ME, which led to a doctorate awarded by the University of Salford.

On a .com site (i.e. commercial site, not the NHS).

AlarmBelle

kangaroo wrote: »

On a .com site (i.e. commercial site, not the NHS).

You think he is lying about

The novel osteopathic treatment developed by Raymond Perrin has been statistically validated in both clinical trials,

I know what dot com means:rolleyes:

kangaroo

AlarmBelle wrote: »

You think he is lying about

The novel osteopathic treatment developed by Raymond Perrin has been statistically validated in both clinical trials,

I don't think he has convinced the medical establishment in the NHS to the extent that:

The Perrin Technique is on the verge of being adapted by the NHS in the UK as 'the' treatment for CFS, ME and Fibromyalgia,

By the way, I think it would be better and preferable if we could try to stick to the issues, rather than personalise the discussion, in this thread.

Mr Slow

RNLase wrote: »

Hi OP, great you found something to help you.

I know someone who did this for a few months and it didn't help them unfortunately, so I suppose if someone were tryng this (or any other treatment) they might want to consider what money they could afford to lose in case it doesn't work, or only helps a bit. This is what I try to do anyway when considering trying any treatment. Of course if something helps then I try to evaluate after a time whether the benefit is worth the cost of ongoing long-term treatment (sometimes it is and sometimes it isn't depending on the degree of improvement from the treatment).

There are not a lot of trials on treatments for ME/CFS, and responses to treatment seems so variable, so anything is a bit of a gamble.

I usually try to decide in advance how long I might try something for (usually I try a minimum of a few weeks, but it depends on what the treatment is and whether I am having a bad, neutral or good reaction), and how much money I can spend before stopping if it not having enough of a positive effect. I try to stick to that as much as possible. Though it can be hard not to keep trying something once it is started.

I have literally spent thousands trying things out (I would say possibly in excess of 20,000 Euros, I'm afraid to count it (!) - I have been sick for over a decade) only to find in the end that rest, pacing, getting a mobility scooter, and sleep medications were the things that helped me most. I tired accupuncture years ago and I remember thinking in the end that the money I was spending on that would be better spent on things to help me pace better, such as taxis instead of overdoing it trying to walk to things.

Anyway this treatment seems more rational that some things so it might be worth a shot, but it looks like it won't work for some so it is worth bearing that in mind as well.

I'm sorry to hear you've been suffering for so long.

I spoke to someone a while back who had tried the Perrin treatment a few years ago without success, he then went to some specialist to find the root cause of his toxicity and found it was rooted in mercury fillings if I remember correctly, once he had dealt with that he started treatment again and at that time was making good ground.

Agree totally re the investment, but when you're suffering anything is worth trying I'm just lucky that I've found something that works for me and want to share that in the hope that it will help someone else.

nicolas1501

Thanks Guys for all the information. I have seen so many doctors over the past few years that I feel that I should at least give it a try. Thanks again!

Mr Slow

I've been following this blog for a while, take a look.

http://cfsrecovery.blogspot.ie/

nickintime

HI Nicolas,

Have been a little under the weather and busy recently so only getting back to you know..sorry!
Regarding the Perrin Technique I have only had the initial assessment and got a 5 out of 10. I plan to start the sessions over the next coming weeks once I recover from a persistent bout of Bronchitis. I think Conor has had great success with it and is worth reading his comments.
Drummartin Clinic and Dr Patrick McGovern have been good to me in most ways. I have been with Dr McGovern for almost a year now. I believe his initial non judgemental assessment is worth a lot. Also his tests can help rule out loads of other possible causes of your major symptons. His tests are carried out in UK and USA and are much more in depth than your local GP tests. I had saliva,urine,stool and blood tests carried out. I was a sugar junky due to the CFS lethargy and the tests showed a stomach yeast infection that had developed into leaky gut. I was so over weight and bloated. So he sorted that out and ruled out Thyroid problem etc. Its well worth it for those tests alone. Since then I have been on loads of supplements and improved considerably. Unfortunately I seem to have plateaued out now so going to leave Drummartin clinic and spend my money on perrin technique. hopefully that will carry me over the line and back to true health.
all the best,

Nicky

Mr Slow

AlarmBelle wrote: »

Do what you think best for yourself and ignore negativity. keep us posted on how you get on

Had my 12 week assessment today, I've gone from 13 symptoms to 6, my overall score is now 7.5 from a low 6 and I can start running again, softly softly but I'm getting there.:)

Mr Slow

It's been 9 months since I started treatment, when I started I felt toxic all the time, I was lethargic, I was in a very negative place and found working a major struggle. I had gone from running a marathon in 3 hours 29 mins to being unable to run any distance without a subsequent crash lasting days/weeks.

I'm now 90% well, I still have to watch how much I push myself but I've run 20 miles in the last 7 days without any ill effects, I do get tired but once I get some extra sleep I'm back to normal, I had a minor throat infection a few weeks ago which set me back a bit but I bounced back in no time relative to previous bouts of illness. Being able to exercise is helping greatly with my energy levels/general well being.

LegacyUser

Mr Slow wrote: »

It's been 9 months since I started treatment, when I started I felt toxic all the time, I was lethargic, I was in a very negative place and found working a major struggle. I had gone from running a marathon in 3 hours 29 mins to being unable to run any distance without a subsequent crash lasting days/weeks.

I'm now 90% well, I still have to watch how much I push myself but I've run 20 miles in the last 7 days without any ill effects, I do get tired but once I get some extra sleep I'm back to normal, I had a minor throat infection a few weeks ago which set me back a bit but I bounced back in no time relative to previous bouts of illness. Being able to exercise is helping greatly with my energy levels/general well being.

Hello Mr Slow
It's great to hear about your improvements ovwer the nine months you mention above - I hope it is continuing? Do you put all your improvement down to Perrin Technique? I've been doing Perrin for about 14 months now, but wouldn't yet attempt to go for a run. Although i am vastly improved, I still don't seem to have any reserves of energy. Do you still do all your massages everyday even now you're feeling so much better?

Beauts

Hello Mr Slow
It's great to hear how well you have been doing in the 9 months you posted about in your last post - I hope it is continuing? I am wondering whether you aare putting all your new found energy down to Perrin? I've been having treatment for around 14 months now (mine is the www.cfsrecovery.blogspot.co.uk that you highlighted earlier in this thread). I have had periods with really good energy levels, but currently find myself with no extra reserves of energy so the minute I try and exert myself above my normal going about my daily routine activity my body starts to complain which means that any sort of sporting activity is still off limits (i do yoga).
My Perin therapist has talked about "Dredging" - bringing up toxins even this far into treatment that have been locked away and stubborn up until this point - so I wonder if that is what is happening with me now.
Are you still doing all your massages every day now that you are feeling so much better?
Interested to hear more.
Beauts

Chrisita

This is a really interesting thread. I have had a form of CF for over 20 years and have spent a fortune in the pursuit of a cure, and the latest and best is also the cheapest. Celtic sea salt. Has anyone else tried this? I have low blood pressure. I also had major depression and am treating for histadellia and copper overload. These exacerbated my fatigue symptoms. Copper overload is apparently rampant in Ireland. I hope this helps someone.

cocobubbles

Hi guys,

I'm looking for some help and fast!! Long story short(ish) - I've been suffering with severe fatigue for the last 10 years or so, I'd had so many blood tests done that I've lost count, thyroid etc all normal. Been to the doctor so many times and told that "chronic fatigue syndrome" is very vague and can't be diagnosed and no GP will help me!! It's starting to become unbearable, I go to sleep for hours when i come home from work, wake up feeling the same, then i go to bed for another 9-10 hours and don't feel like I've even slept!! It's seriously affecting my life & my relationship with my partner. I was diagnosed with depression 3 years ago and every doctor since has blamed the extreme exhaustion on that but I know my own body and that's not the reason for it. I'm on medication & fine at the moment (touch wood!) but the only thing that is bringing me down is the tiredness.
Can anyone recommend a GP in Dublin who is experienced with CFS? I know that the Willow clinic specializes in it but I can't really afford €150 + €50 per session afterwards.

Thanks in advance!!