Thank you for your thoughtful and considered response to my (and others) questions here regarding your experience with LP.
I confess I remain skeptical but am glad for you that you have found it works.
In your last post (#280) I'm still a bit squeamish about the idea that our responses to internal and external stimuli are inappropriate.
And I do have one more question for you regarding the efficacy of LP. I know I would feel more comfortable with the narrative of your experience if You would confirm for us here that you are in no way receiving compensation for sharing your experience here.
I'm sure you can understand why that would be information we'd want to know.
And if you are willing to continue to engage with us it would be great to know how this treatment works out for you long term.
Would you say that all your symptoms are 100% resolved?
Can you do any activity you want without experiencing any repercussions now?
And do you need to continue to use the techniques you learned from LP or is that no longer necessary?
If you could just clarify for me, in post #275 you mentioned your symptoms one of which is PEF, I don't know what that is.
Perhaps you didn't give the full laundry list of symptoms but from what you did write I'd like to point out that while your experience of these would have been quite debilitating it doesn't match the literally dozens of symptoms present in typical ME presentation. While you have the larger more familiar symptoms, pain fatigue, cognitive fog you don't seem to have any of the other symptoms that differentiate ME from any number of other illnesses. Dr's sometimes use the 'loose' Fukuda or Oxford criteria for diagnosis that essentially put anyone with lingering fatigue into the same bucket diagnostic wise.
Generally with ME other typical symptoms would be: various sleep disruption issues--unrefreshing sleep, sleep interruption, problems falling asleep, --migraines, severe and frequent vascular headaches especially ones that mimic sinus pain, --fasciculations, all over the body and frequent, --sensory issues, sensitivity to sound, light, smell, touch, sensitivity to temperature is very common and so on,
--heart related issues that can be related to POTS many and varied, --bowel symptoms many and varied, --autoimmune type symptoms, reynauds phenomena, dry eyes or Sjogrens syndrome, and many others.
With the exception of bowel issues, very common in ME I have chosen examples that I am familiar with from personal experience.
We all want to get well. Really we do. I just don't see how LP can effectively cure all this? What am I missing?
Thank you for your thoughtful and considered response to my (and others) questions here regarding your experience with LP. - my pleasure - I thought I had already responded to your post #291 but it hasn't appeared so here goes again
I confess I remain skeptical but am glad for you that you have found it works. - understand you are sceptical, so would I be if I hadn't had first hand experience of what I'm about to describe
In your last post (#280) I'm still a bit squeamish about the idea that our responses to internal and external stimuli are inappropriate. I used the term "inappropriate", but perhaps "unhelpful" would be better. For example, I used to suffer from panic attacks due to various stimuli (e.g. a very mild chest pain due to indigestion - a stimulus) which would lead to my body dumping adrenaline into my bloodstream due to me thinking (unconsciously) I was having a heart attack ( an unhelpful/inappropriate response to mild chest pain)
And I do have one more question for you regarding the efficacy of LP. I know I would feel more comfortable with the narrative of your experience if You would confirm for us here that you are in no way receiving compensation for sharing your experience here. This is an odd question to ask because if I were receiving some sort of compensation I would presumably be the sort of person who would have no compunction about lying and saying I wasn't even though I was! But anyhow, the answer is a categorical no, I am not. LP worked for me and I want visitors to this site to know that for some it can work, rather than they come away with the impression it's complete baloney and doesn't work for anyone, which is untrue.
I'm sure you can understand why that would be information we'd want to know.
And if you are willing to continue to engage with us it would be great to know how this treatment works out for you long term. OK, no problem, this forum will be the first to know if I relapse
Would you say that all your symptoms are 100% resolved? Yes
Can you do any activity you want without experiencing any repercussions now? I train at the gym 4 times a week (hardcore), I play golf and do the odd bout of High Intensity Interval training at home if I can't get to the gym. I've just come back from a walking holiday in Scotland. No repercussions
And do you need to continue to use the techniques you learned from LP or is that no longer necessary? I haven't for the last 3-4 months, but my colleague (see below) still has to now and again - with her, symptoms do come back (much milder than before) but she controls them with LP. I understand that I might need to use LP again if I start to relapse
If you could just clarify for me, in post #275 you mentioned your symptoms one of which is PEF, I don't know what that is. post exercise fatigue - I would feel a bit better, exercise and then crash horribly - this is a very common occurrence for those suffering ME/CFS
Perhaps you didn't give the full laundry list of symptoms but from what you did write I'd like to point out that while your experience of these would have been quite debilitating it doesn't match the literally dozens of symptoms present in typical ME presentation. While you have the larger more familiar symptoms, pain fatigue, cognitive fog you don't seem to have any of the other symptoms that differentiate ME from any number of other illnesses. Dr's sometimes use the 'loose' Fukuda or Oxford criteria for diagnosis that essentially put anyone with lingering fatigue into the same bucket diagnostic wise. I get the impression that in the UK at least, some patients (including me and my colleague) are dumped in an overarching bucket and might be misdiagnosed - which is why I was very careful to say visitors to this site who have been similarly misdiagnosed might benefit from LP. just because we've been misdiagnosed, it doesn't mean LP is hogwash.
Below I'll mark your text with either C (colleague) or D (D-ster) to describe the symptoms we had
Generally with ME other typical symptoms would be: various sleep disruption issues--unrefreshing sleep C/D, sleep interruption C/D, problems falling asleep C, --migraines C/D, severe and frequent vascular headaches especially ones that mimic sinus pain,C/D --fasciculations, all over the body and frequent, C - my colleague's tremors were unbelievably violent and terrifying to watch, I didn't suffer this thank God--sensory issues, sensitivity to sound, light, smell, touch, sensitivity to temperature is very common and so on,
--heart related issues that can be related to POTS many and varied,C had serious heart issues, including excruciating chest pain which has almost completely disappeared since LP --bowel symptoms many and varied, D (I suffered from chronic IBS which disappeared following LP - literally overnight - I have had one episode since January, strangely enough 2-3 days ago but that's it) --autoimmune type symptoms, reynauds phenomena, dry eyes or Sjogrens syndrome, and many others.
At the risk of repeating myself on this forum I'd like to describe my colleague's experience - she was basically bedbound during the weekends, and was brought into work by her husband for 2-3 hours a day. As her line manager I had to edit her emails before she sent them due to the cognitive issues her condition was causing. Its difficult to describe how ill she was for 4-5 years but it was awful to watch - utter fatigue, pain, depression, her diction and verbal communication skills were badly compromised, from being a long distance runner she went to taking 5 minutes to walk to the office down the corridor, a distance of maybe 80 feet. And yet the same woman on the evening of the first day of her LP program pulled her suitcase a mile from the course venue to the hotel she was staying at and then went for a short run. She returned to work 3-4 days later and other colleagues came in to see me and said "Have you seen L? She's better!" When I saw her for myself I was flummoxed - her face had colour, her eyes were bright, her gait was upright, she was moving at a normal pace, everything about her outward appearance was transformed. I and those other colleagues in the know were gobsmacked. And when I saw her, it was like that scene in the restaurant from When Harry Met Sally - "I want what she's having!"
With the exception of bowel issues, very common in ME I have chosen examples that I am familiar with from personal experience.
We all want to get well. Really we do. I just don't see how LP can effectively cure all this? What am I missing? If I could answer your final question Snowdrop I would - but I can't. It appears impossible, but I'm still well (I did LP in January) and my colleague is still well after 13 months. As a physicist I can understand some pretty weird shit about the universe, but I can't understand this. But everything I've said in this post is true - just because I can't explain it, doesn't mean it didn't happen. I wish you all the very best in your journey and thank you for taking the time to write and be civil - it means a lot to me
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