POSITIVE THINKING

Bonjour, 

I'm sorry if this blog is longer than usual but I'm feeling angry, very angry,  disgusted, insulted, offended, disappointed..... I could go on!  

It only takes one misleading, misrepresentative blog and a tv interview about M.E./CFS and long Covid to cause a great deal of anger and upset among the M.E. community. It feels as if all the time we take one step forward only to be set back once again. 

It started with a blog by Professor Paul Garner  which was particularly offensive to me and all people who have been suffering with M.E. for many years and no doubt those who are now very ill with long Covid. 

In his blog he claimed that you can recover from long Covid and M.E./CFS by positive thinking and exercise!! What?!!! 

Then as insult to injury this blog was rapidly followed by an interview on Breakfast BBC tv where both Professor Paul Garner with Dr Clare Gerada told stories of recovery using gradual increases in exercise and that there is no illness where exercise is not beneficial!!! 

Thankfully there has been some very good response to both. 

You can read an excellent reply by David Tuller and many of the comments 

This is also a truly excellent article by a former clinician 

And another excellent blog by Valerie Eliot Smith 

I know this is a lot of reading, especially for those with M.E., but do try to take the time to understand what has happened and what has been said. It's important as it affects us all. 

Then hopefully you will understand why I'm angry and most probably you will feel the same.  

When I read those words 'positive thinking' I immediately thought of the song by Morecambe and Wise 

If only it was that simple to recover from M.E.! 

I'm a fairly positive person. That's helped me to cope with living with M.E. for over 18 years but it's not helped me to recover. You just can't wish it away 

When you've been ill for so long you are prepared to try anything that might lead to an improvement or a cure. 

I know I've certainly tried many different approaches, strategies, medications, as well as reading a lot of advice and information that's available online and in books.

When I first became ill I was advised to follow a graded exercise programme but that only made me feel much worse and brought on a relapse. 

Cognitive Behavioural Therapy was also suggested. While talking to someone helped a little with coping strategies it was far from a cure. 

This poem summarises my experience of GET & CBT 

Sometimes people with M.E. are accused of being afraid to carry out exercise. This is my response in another poem 

I know that the more I push myself the more I become more ill, which leads to post exertional malaise and or even a relapse. 

I know after many, many years of suffering, of trial and error that the two strategies that help me the most are pacing and rest. 

Everyone with M.E. knows that over exertion and pushing oneself will lead to post exertional malaise or relapse. 

You can read more about this in some of my previous blogs. 

I PUSHED TOO FAR , DON'T BE FOOLED , ALIVE BUT NOT LIVING , I'M NOT AFRAID 

If you look at the latest criteria for M.E. you will see that PEM or PENE is essential criteria for M.E. 

The Canadian Consensus Criteria describes PEM as usually lasting 24 hours or longer. The word 'relapse' doesn't appear in the CCC clinical case definition. 

The International Consensus Criteria uses the term Post-Exertional Neuroimmune Exhaustion (or PENE) instead of PEM. It describes PENE as usually lasting 24 hours or longer, but defines PENE broadly so as to include relapses.     

As I write the NICE guideline for "chronic fatigue/myalgic encephalomyelitis (or encephalopathy) or CFS/ME is in the final stages of being updated. The last version was issued in 2007. The draft version of the new guideline was released in November 2020. The final version is due in April 2021. 

The new draft guideline indicates that Graded Exercise Therapy is being removed as a treatment recommendation and that Cognitive Behavioural Therapy is being downgraded from a treatment aimed at brain retraining to a purely supportive therapy. 

The draft guideline also specifically removes pseudoscientific treatments such as the Lightning Process (LP)  as treatments for CFS/ME. This is the process which Professor Garner apparently used to achieve his recovery from long Covid. 

This is Invest in ME Research's full response to the draft NICE guidelines 

Recently I read a phrase that took me back to January 2003 when I was first seriously ill. In fact in the current coronavirus pandemic I keep reading so many stories and phrases that resonate with me and my life over the past 18 years

• I thought that I had my life ahead of me
• having to rethink much of life
• the new normal life after Covid
• facing anxiety
• dealing with uncertainty
• finding acceptance
• First denial, then fear
• everyday things we miss
• no longer taking things for granted
• life beyond Covid 
• cancelling life events
• missing family and friends 
• wanting the life back before Covid
• pain and solitude

Does any of this sound familiar? It does to me. 

Time will tell if those with long Covid will develop M.E. 

Maybe this will lead to better understanding and help for those in the M.E. community who have suffered and struggled for so long. 

Well that's all for now folks. This blog has taken several days to write and I've tried to cover as much as possible. 

I now need to go and lie down before a relapse sets in and no amount of positive thinking can avoid that!!! 

Au revoir
The French Femme
xxx