Lightening process

Jessie 107

Jessie 107

Senior Member
Messages
292
Location
Brighton
I have now been seen by the rumatologist who unsurprisingly found nothing wrong, he told my doctor to refer me to a cfs clinic.

I have just been to see my doctor, he told me that the cfs clinic is not worth going to as they won't cure me, I know they won't but maybe helpful in finding my baseline and trying to control symptoms. So anyway, he is going to refer me, but he said if you want to get better you will have to pay for it and the lightening process is what he recommends as alot of his patients have got better after doing it.

But I don't believe that it works, I believe it's like brainwashing your mind to convince yourself that you can stop the symptoms with your mind, also if it were that good there wouldn't be many of us with cfs.

The course is for two days and costs around 600 to 700 pounds! Not cheap. What do you all think of the lightening process? Do you know anyone who has tried it?
Would be interested to hear your thoughts.

I also asked if he could give me any medication for when my symptoms are bad and he said no, what he has tried with his patients before hasn't worked and has just given them side effects. I don't know what supplements to try or even if they will help.
Any suggestions?
Jessie
 
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C

charles shepherd

Senior Member
Messages
2,239
Jessie

Firstly, re the Lightning Process:

Just in case you are not aware of our longstanding concerns about the Lightning Process, in particular the way in which it is being promoted/advertised to people with ME/CFS

As a result we have made complaints to both Trading Standards departments and to the Advertising Standards Authority.

ASA complaint upheld:

http://www.meassociation.org.uk/201...tion-on-phil-parker-group-ltd-22-august-2012/

We do not therefore endorse or recommend the Lightning Process to our members

Dr Charles Shepherd
Hon Medical Adviser, MEA
 
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charles shepherd

Senior Member
Messages
2,239
Secondly, it might be helpful if you provided your doctor with some up to date and evidence based medical information on ME/CFS - because while we don't have an effective drug treatment aimed at the underlying disease process there is a quite a lot that health professionals can do in relation to providing sound advice on activity/energy management, symptomatic relief, and all the other aspects of managing a long term medical condition (e.g. help with benefits, employment)

I have attached some info on what we are doing with our Medical Education Programme below

And if you have a good local ME/CFS clinic/service nearby, that takes a sensible approach to management, I would go back and ask your GP if your could be referred

MEA INPUT INTO (UK) MEDICAL EDUCATION ON ME/CFS:

We still have funds available in our Medical Education Department to send out copies of the 136 page MEA purple book (ME/CFS/PVFS - An Exploration of the Key Clinical Issues) to any GP or hospital doctor who would benefit from having up to date information on:

1 All aspects of Research into ME/CFS,
2 Clinical Asseessment and Diagnosis of ME/CFS,
3 All aspects of Management of ME/CFS

The MEA purple book also has a very comprehensive Reference section containing over 600 of the most important research papers and clinical trial reports

As the MEA takes a very critical position on NICE, CBT, and GET, this is reflected in our purple book information and guidance to doctors

The book is sent out with a covering explanatory letter from myself

If you want a copy sending to your GP or hospital specialist, please send the name of the doctor and the surgery or hospital address to Gill or Helen at the MEA office

MEA purple book: http://www.meassociation.org.uk/201...ch-masterwork-is-published-today-1-june-2016/

The 2017 edition should be available shortly

We also met with Professor Ian Curran from the GMC at the House of Lords back in February to discuss medical education at both an undergraduate and postgraduate level

We are now hoping to have a similar discussion with Professor Jenny Higham from the Medical Schools Council - the organisation that is responsible for the content of the undergraduate medical curriculum

Minutes for the House of Lords meeting with the GMC representative:

http://www.meassociation.org.uk/201...nutes-of-the-meeting-held-on-7-february-2017/

Dr Charles Shepherd
Hon Medical Adviser, MEA
 
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charles shepherd

Senior Member
Messages
2,239
Re hospital based ME/CFS referral services here in the UK:

There is a full list of contact details for all the ME/CFS clinics in the UK on the MEA website:

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

If there is not a suitable service nearby the Countess of Mar has established through a House of Lords PQ that you can be referred elsewhere to an NHS service/consultant of your choice:

http://www.meassociation.org.uk/201...-their-own-choice-of-consultant-24-june-2014/

CS
 
JoanDublin

JoanDublin

Senior Member
Messages
369
Location
Dublin, Ireland
Jessie 107 said:
I have now been seen by the rumatologist who unsurprisingly found nothing wrong, he told my doctor to refer me to a cfs clinic.
I have just been to see my doctor, he told me that the cfs clinic is not worth going to as they won't cure me, I know they won't but maybe helpful in finding my baseline and trying to control symptoms. So anyway, he is going to refer me, but he said if you want to get better you will have to pay for it and the lightening process is what he recommends as alot of his patients have got better after doing it.
But I don't believe that it works, I believe it's like brainwashing your mind to convince yourself that you can stop the symptoms with your mind, also if it were that good there wouldn't be many of us with cfs.
The course is for two days and costs around 600 to 700 pounds! Not cheap. What do you all think of the lightening process? Do you know anyone who has tried it?
Would be interested to hear your thoughts.
I also asked if he could give me any medication for when my symptoms are bad and he said no, what he has tried with his patients before hasn't worked and has just given them side effects. I don't know what supplements to try or even if they will help.
Any suggestions?
Jessie
Click to expand...

Jessie you might find this blog post useful https://hubpages.com/health/The-Lightning-Process-Didnt-Work-For-me
 
hellytheelephant

hellytheelephant

Senior Member
Messages
1,140
Location
S W England
Valentijn said:
Your doctor is a negligent quack. He should not be referring you to an expensive private treatment which is unproven and completely nonsensical. He also should not be refusing to treat your symptoms to the best of his ability.

Report him and find a new doctor.
Click to expand...
Amen! There are no 'cures' available but plenty of ways to manage symptoms and pain. He should not be trying to get you to pay for anything! Your local ME support group might have a list of sympathetic GPs in your area. There are good GP's out there.
 
Hilary

Hilary

Senior Member
Messages
190
Location
UK
Hi @Jessie 107 - I did the Lightning Process some years ago - expensive, a waste of time and, because I threw myself into it with gusto (I knew someone who had actually done well with it), it was rapidly followed by a nasty relapse as I'd overdone physical activity.

I'm quite sure it is effective for some people who have been diagnosed with CFS, ME or ME/CFS... and therein lies the problem I believe. Diagnosis is so atrocious and ME is used as a wastebasket diagnosis - so some people who are told they have it probably don't (just as plenty of people who do are never diagnosed). It's a mess.

My suggestion would be to do your own research, use the very helpful and extremely well-informed members on here and listen to your own body. If I had even the slightest suspicion that I had ME, I wouldn't touch LP with barge pole.
 
Molly98

Molly98

Senior Member
Messages
576
What an odd doctor. Maybe they also recommend Hogwarts for cancer patients and voodoo for broken legs.

This positive-negative thinking thing is baffling me a bit.
If I notice that I am in pain, is that a negative thought, or just noticing?
If I say I am really exhausted today again, am I just stating what is or is that negative according to the lightening process?
It I notice and say I am really hot today, is that a positive or negative thought? because I may or may not like being hot.

If I have always longed to fly, and I really really put out of my head the 'negative' ( reality) that I can't fly, and I refuse to listen to this and I really really think positive and don't let any of those nasty negatives worm their way in and I climb up on my roof and leap off .........but find I don't fly ...... but crash to the ground and probably break many bones in the process, would the lightening process teachers tell me that I did not fly because I was choosing to 'do non flying' or somehow a negative thought got in there and that is why I did not fly. Where does mind over matter stop applying? or doesn't it? What are its limits, or are there none?

It just I really want to learn quidditch.
 
dangermouse

dangermouse

Senior Member
Messages
430
Molly98 said:
What an odd doctor. Maybe they also recommend Hogwarts for cancer patients and voodoo for broken legs.

This positive-negative thinking thing is baffling me a bit.
If I notice that I am in pain, is that a negative thought, or just noticing?
If I say I am really exhausted today again, am I just stating what is or is that negative according to the lightening process?
It I notice and say I am really hot today, is that a positive or negative thought? because I may or may not like being hot.

If I have always longed to fly, and I really really put out of my head the 'negative' ( reality) that I can't fly, and I refuse to listen to this and I really really think positive and don't let any of those nasty negatives worm their way in and I climb up on my roof and leap off .........but find I don't fly ...... but crash to the ground and probably break many bones in the process, would the lightening process teachers tell me that I did not fly because I was choosing to 'do non flying' or somehow a negative thought got in there and that is why I did not fly. Where does mind over matter stop applying? or doesn't it? What are its limits, or are there none?

It just I really want to learn quidditch.
Click to expand...


It baffles me too. In the past (stupid but desperate) I had a go at ignoring symptoms and carried on regardless. When I caught myself noticing severe pain developing or knowing that energy was absent or that I was beginning to talk gibberish I washed over it with a forced smile and pushed on (I still took rest breaks & still paced myself, thankfully).

The outcome (you can guess) was a long and difficult relapse.

What I find difficult, too, is not wanting to say, each time I'm asked how I am (which is mostly not good lately) that I'm not doing well. But, if I say I'm OK (to be positive) people think I'm feeling better. What do you do? Pretend you are OK and then folk don't understand why you can't then socialise. Or tell the truth so that folk know what you're limits are.
 
Jessie 107

Jessie 107

Senior Member
Messages
292
Location
Brighton
Thankyou all for the good advice.
I will definitely be giving the lightening process a miss, I think even going on the course would make me ill, and with my brain fog and lack of concentration, I couldn't do two days that's for sure.
My doctor is coming up for retirement soon so maybe he is just out of touch with this illness.
Thank goodness I found this site, everyone is so well informed, I have learnt more on here than anywhere.
Regards
Jessie
 
ladycatlover

ladycatlover

Senior Member
Messages
203
Location
Liverpool, UK
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