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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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History of smoking a possible co-factor of ME/CFS?

CFS patients - have you ever or do you now smoke cigarettes?

  • Firm ME/CFS diagnosis - currently smoke cigarettes

    Votes: 14 10.1%
  • Firm ME/CFS diagnosois - past cigarette use only

    Votes: 40 28.8%
  • Firm ME/CFS diagnosis - have never smoked cigarettes

    Votes: 69 49.6%
  • Unconfirmed or no ME/CFS diagnosis - currently smoke cigarettes

    Votes: 4 2.9%
  • Unconfirmed or no ME/CFS diagnosois - past cigarette use only

    Votes: 5 3.6%
  • Unconfirmed of no ME/CFS diagnosis - have never smoked cigarettes

    Votes: 7 5.0%

  • Total voters
    139

Levi

Senior Member
Messages
188
I can not find any research on this, so I am throwing up a poll on PR to explore any association, negative or positive, of cigarette tobacco smoking to ME/CFS. I hope to keep the responses limited to cigarettes only, since filtration materials and commercial herbicides, pesticides, or preservatives may be looked at later depending on what this poll reveals.

In order to use the wealth of existing epidemiological data and employ the stochastic process, lets please use "ever having smoked on a daily basis" for one month or more as a qualifier for being a past smoker. Same for non-smokers who have merely experimented with cigarette use; please respond as "never smoked". Many thanks for taking a few moments to do this poll.
 

ukxmrv

Senior Member
Messages
4,413
Location
London
I've noticed that family members who have ME (or similar conditions as it varies in my family) either smoke or take up smoking after they become ill. Mainly the latter. I'm a non-smoker but in the minority here.
 

paddygirl

Senior Member
Messages
163
I've noticed that family members who have ME (or similar conditions as it varies in my family) either smoke or take up smoking after they become ill. Mainly the latter. I'm a non-smoker but in the minority here.

I didn't get a diagnosis for FM for years but fit the FM/ME profile better. Years of struggling with work and kids and a growing mountain of things to do while fighting the symptoms and not trusting my own body (and trusting doctors too much) led to huge anxiety. I started smoking at 50 which was 3 years ago, this on the back of being anti smoking and a health nut to boot.

No wonder the Wessely lot got such a grip on us, an invisible illness that decimates you, and the external signs of that struggle are then taken by the psychs and turned against us.:worried:
 

Dolphin

Senior Member
Messages
17,567
Goedendorp et al 2009: Lifestyle of CFS patients

You might be interested in this study:

The lifestyle of patients with chronic fatigue syndrome and the effect on fatigue and functional impairments.

J Hum Nutr Diet. 2009 Jun;22(3):226-31. Epub 2009 Feb 17.

Goedendorp MM, Knoop H, Schippers GM, Bleijenberg G.

Expert Centre for Chronic Fatigue, Radboud University Nijmegen Medical Centre, Nijmegen, The Netherlands. m.goedendorp@nkcv.umcn.nl

Abstract
BACKGROUND: Little is known about the lifestyle of patients with chronic fatigue syndrome (CFS) and its influence on symptoms of CFS. The present study aimed to investigate the lifestyle of patients with CFS, and to assess whether lifestyle factors are related to fatigue and functional impairments.

METHODS: Two hundred and forty-seven patients fulfilling the Center for Disease Control criteria for CFS were included. Validated questionnaires were used to collect data on lifestyle factors, smoking, intake of alcohol, fat, fibres, fruit and vegetables, body mass index (BMI), fatigue severity and functional impairments.

RESULTS: Of the CFS patients, 23% smoked, 32% had an unhealthy BMI, and none had an unhealthy alcohol intake. A majority had an unhealthy food intake: 70% had unhealthy fat, fruit and vegetable intake, and 95% had unhealthy fibre intake. Compared with the general Dutch population, significantly fewer CFS patients were overweight. Significantly more female CFS patients abstained from alcohol, and fewer male CFS patients smoked. Unhealthy lifestyle factors were not significantly associated with fatigue severity or functional impairments.

CONCLUSIONS: CFS patients tend to lead a healthier lifestyle compared to the general Dutch population. However, no relationship was found between lifestyle factors and fatigue severity and functional impairments in CFS.

PMID: 19226353 [PubMed - indexed for MEDLINE]
 

muffin

Senior Member
Messages
940
Smoke like a chimney

I have been a long time smoker, a very heavy smoker but I really don't know how much smoking plays into ME/CFS. I am sure it does not help the disease but a role in the disease? Not so sure about that one.

I smoke more now being sick than I did healthy. I smoke to stay awake. We know the chemicals in cigs and how they hit the dopamine receptors (pleasure center) and kick the adrenaline up. My doctor told me he thought my heavy smoking was something that my body needed and not just the dopamine, adrenaline, etc. but something further down the path. He wasn't letting me off the hook for smoking just noting that we sick must be getting something more from smoking - what, he didn't know or would guess.

If smokers got CFS/ME in greater numbers, then why don't the numbers match up? Tons of people have or do smoke and they don't have ME/CFS. All those nasty chemicals and poisons do not help us but I would not say that they are playing a major role in the majority of us either.
 

Levi

Senior Member
Messages
188
In the U.S. about 20 percent of the general population have a history of smoking or currently smoke. In AIDS patients, the number is 50-70%; with the most oft quoted figure at 60%. How does this number compare to ME/CFS patients? This article hints at an organic causal explanation:
http://lists.essential.org/1996/dioxin-l/msg00154.html

Thanks to all who are responding here. As for the Netherlands research above; the 23 percent figure is in line with non-anxious depressives who have a history of smoking. Interesting.
http://ajp.psychiatryonline.org/cgi/content/full/160/9/1663
 

ukxmrv

Senior Member
Messages
4,413
Location
London
Muffin, that's what my ME(like) smoking family members say. Something in the cigarettes helps them to function better. I'm not a smoker but have this feeling that it goes deeper than the obvious addiction/pleasure stuff. All of them eat very healthily and don't abuse coffee, alcohol or other drugs.
 

anne_likes_red

Senior Member
Messages
1,103
I've never smoked and pretty much have to cross the street rather than walk into someone elses second hand cigarette smoke.
(My parents did smoke before I was born and when I was young, though my mother stopped while pregnant.)
 

Wonko

Senior Member
Messages
1,467
Location
The other side.
despite a lot of both attempts to give up and forced withdrawal (it's not always possible to actually get cigarettes lol) I still smoke a lot of the time - I've never noticed a significant physical improvement when I stop and mentally I fall apart (dizzy, on the verge of blacking out a lot of the time, much more prone to overload, no emotional control, feels like I'm existign on black ice, visual issues, sleepy, increased memory issues, become exeptional slow both on the uptake and reflexwise, etc. etc.) - the longest I've quit for in the last few years is 7 months and all of these symptoms (and more) were still present (over and above normal neuro/cog issues)

the reason for my post is simple - after having given up for a while within half a cigarette there is an immediate physical energy drop - I can go from being able to walk to barely being able to stand - and it doesnt go away - it's not just a "rush" - so whilst not smoking doesnt seem to improve things physically (and makes life much less fun mentally) smoking definately reduces my physical capabilities (whilst bringing vision and cognative abilites back upto their admittedly not very high baseline)

smoking definately affects M.E. at least in my case - but once you've started it's a lose/lose situation healthwise - when i do stop these days it's generally for financial reasons not health
 

Dolphin

Senior Member
Messages
17,567
Exact figures from Goedendorp et al (2009)

Exact figures from Goedendorp et al (2009) - all lower for CFS group

Sex Age (years) Sample Smoking

% (n) P

---------
Female 18–44
CFS 26.7 (32/120) 0.184
Dutch population 30.6 (424/1384)

p=0.184

------------
Female: 45–65
CFS 20.0 (11/55) 0.074
Dutch population 28.1 (484/1722)

p=0.074
------------
Male 18–44
CFS 20.5 (8/39) 0.008*
Dutch population 39.5 (539/1356)

p=0.008*
-----------
Male 45–65
CFS 17.2 (5/29) 0.023
Dutch population 34.9 (589/1688)

p=0.023
-----------
p< 0.01 was considered statistically significant
 

IntuneJune

Senior Member
Messages
562
Location
NorthEastern USA
Never smoked, Mom and Dad smoked heavily when I was very young---my infant years through to about 10 years of age. Mom continued to smoke heavily, Dad off again on again.

June
 

SOC

Senior Member
Messages
7,849
I didn't get a diagnosis for FM for years but fit the FM/ME profile better. Years of struggling with work and kids and a growing mountain of things to do while fighting the symptoms and not trusting my own body (and trusting doctors too much) led to huge anxiety. I started smoking at 50 which was 3 years ago, this on the back of being anti smoking and a health nut to boot.

Wow, started smoking at 50? I know people who started smoking young for social reasons feel that it helps them deal with anxiety, or something like that. Did you start smoking because of the anxiety? This may sound critical, but I truly don't mean it to, I'm just feeling... well... curious... and nosy, I suppose: Wouldn't it have been easier to treat anxiety with anxiety medication? Or is that a silly question? :confused:
 

SOC

Senior Member
Messages
7,849
How about this - smoking raises your blood pressure. Many PWC's have low blood pressure/issues with orthostatic intolerance/neurally mediated hypotension. Smoking would help with that. There are, of course, other better/safer ways to treat those issues.

Now that's an interesting speculation. Could explain some PWCs' reactions to smoking. Huh......
 

helsbells

Senior Member
Messages
302
Location
UK
Yes having said i smoked heavily to the point of being ill, that was twenty years ago and now cannot be in the same room with someone who has smoked and has the smell on their clothes, let alone someone who is actively smoking.
 

Wonko

Senior Member
Messages
1,467
Location
The other side.
How about this - smoking raises your blood pressure. Many PWC's have low blood pressure/issues with orthostatic intolerance/neurally mediated hypotension. Smoking would help with that. There are, of course, other better/safer ways to treat those issues.
my blood pressure does drop considerably when I stop smoking (25-30 systolic and 20-25 diastolic) but it drops down to normal levels (115/70) - not very low

I've considered POTS etc but dont quite meet the diagnostic criteria numberwise - attemptign to stand unmoving for 30 mins is impossible - I managed 20 mins(ish) and was feelign so ill and in so much pain I couldnt continue (tbh it was near intolerable after 10 mins) - but still the numbers said no - and I TBH havent had the guts to try it again