MEA website survey on Weight Change with ME/CFS (September 2017)

[charles shepherd]

MEA website survey on Weight Change with ME/CFS (September 2017)

Why are we asking about weight change in this month’s ME Association website survey? | 02 September 2017

Changes in weight – which can be upwards or downwards – are often reported by people with ME/CFS and we frequently feature questions on this subject on MEA Facebook for example, which lead to quite popular discussions.

Although there is no research evidence to indicate that the underlying disease process in ME/CFS can affect weight (as it does in conditions like having an overactive or underactive thyroid gland) there are various reasons why people with ME/CFS may find that their weight is increasing or decreasing.

So if you have a noticeable change in weight, this is something that you do need to speak to your GP about – who can check to make sure that this isn’t being caused by another health problem.

Carried on here:
http://www.meassociation.org.uk/201...association-website-survey-02-september-2017/

http://www.meassociation.org.uk/201...association-website-survey-02-september-2017/
Vote on the home page of the MEA website: www.meassociation.org.uk
Current voting:

• 
  What has happened to your weight since you developed ME/CFS?
  
  • Large increase (31%, 21 Votes)
    
    
  • Moderate increase (32%, 22 Votes)
    
    
  • Small increase (3%, 2 Votes)
    
    
  • No change (4%, 3 Votes)
    
    
  • Fluctuates (10%, 7 Votes)
    
    
  • Small decrease (3%, 2 Votes)
    
    
  • Moderate decrease (4%, 3 Votes)
    
    
  • Large decrease (12%, 8 Votes)
    
    
    Total Voters: 68
    

Overseas votes are welcome in this survey

Dr Charles Shepherd
Hon Medical Adviser, MEA

 

[Thinktank]

Voted. Very large decrease for me. Underweight.

 

[JohnCB]

I added a comment to the MEA site

I voted as large increase although I had a significant decrease after that. My ME onset was gradual over several years, but my weight increase was towards the end of that period. The weight gain was rapid and unlike anything I had experienced. At this time I was travelling into London daily to work until I became too ill to work. Illness was fluctuating, it felt like it was coming in bursts. The weight gain was not due to inactivity. I gained some further weight after I had to stop work. Then I experienced a rapid weight loss. I associate that loss with the onset of diabetes.

After my blood sugar was under control I started to gain weight again. Then I went on a serious diet to get rid of the weight and to help blood sugar control. It worked in both respects. I took off 30 pounds and improved my blood sugar significantly. Over the years some, but no where near all, of the weight has slowly crept back on. I am still more than 2 stone below my peak weight. I occasionally do short diets to take off a few pounds as the tendency to gain is still there.

If you looked at a graph you would say that my weight fluctuates. However I know that the periods of weight loss are due to either a second health issue or to my deliberate efforts to get weight off. I associate a rapid weight gain and the tendency to put back what I have taken off with ME. I am sure that the effect of my ME on my weight is one way.

 

[MeSci]

I can't really give a clear answer in the survey, as I initially lost a lot of weight, then gained a lot, then went gluten-free and it fell rapidly and stabilised (vegan too). It started about 22 years ago.

 

[Mrs Sowester]

I had a huge increase in weight at onset, at least 2 or 3 stone, I was permanently hungry. Also stopped smoking which didn't help. I'm pretty sure more pounds have crept on over these last 7 ME years.
I have avoided scales (or looking at the dial!) and told my GP and medical professionals not to tell me.
This spring I broke my ankle and needed blood thinners for 6 weeks, my GP let it slip in KG when he was working out the dosage. That's ok, I thought, I've no idea what that is in Stones.
Within a week I heard someone do a KG to stones conversion on the TV, aaargh!

So I've halved my carbs intake, cut all processed sweet treats, upped protein and massively upped fruit, veg and nuts. Halved Cava (boo).
I'm loosing weight slowly but surely, no idea how much (scalesophobia, medical term, honest) but my clothes are baggy which feels lovely.

 

[lansbergen]

First I lost weight till I was skin over bone then I gained a lot of weight and now I am almost back to my normal.

No dieting and no exersise

 

[rosie26]

I lost a lot weight at severe onset (2001) and never was able make it back up until now. And I think my weight gain now is from menopause, so not natural weight gain, but hormonal.

I notice many put on weight. I wonder if the weight gain, weight loss is one of the differential clues to the subgroups?

 

[TigerLilea]

I've definitely put on weight. I blame most of it on not being active enough.

 

[sissypop]

Large increase. I blame multiple factors. The lupron injections I took, which I believe triggered my me, put me in menopause. So hormonal changes there. Also big drop in activity all I could do is work my job and go home and eat and go to bed. Crashed all weekend. Plus doctors were throwing all kinds of antidepressants at me. Couldn't find anything wrong so I must be depressed. Hungry all the time. Terrible times. I've lost some of the weight I gained but still weigh a lot more than when all this started.

 

[unto]

after the first years I increased to 15kg (normally 75kg), then after another 10 years 2002 I started to suffer from gastro-intestinal influences (with dizziness and vomiting but without fever); I had periods when I got sick every 10 days, I was slim down to get under my weight and I was struggling to recover weight.
two more people who most probably contracted the ME from me
they are slim and also show little neurological dysfunctions such as:
the walk is less stable and less coordinated and the word less loose and less clear .....