• Welcome to Phoenix Rising!

    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.

    To become a member, simply click the Register button at the top right.

If your doctor is clueless, direct them to the BMJ's Best Practice Summary for ME

Countrygirl

Senior Member
Messages
5,404
Location
UK
For UK people who have a GP who is clueless, and indicates it is all in your head, direct them to the BMJ's Best Practice Summary which was updated this July:


http://bestpractice.bmj.com/best-practice/monograph/277.html


Summary
  • Chronic fatigue syndrome (CFS) is characterised by a sudden or gradual onset of persistent disabling fatigue, post-exertional malaise (PEM, exertional exhaustion), unrefreshing sleep, cognitive and autonomic dysfunction, myalgia, arthralgia, headache, and sore throat and lymph nodes, with symptoms lasting at least 6 months.
  • Exertional exhaustion is the critical aspect that distinguishes myalgic encephalomyelitis/CFS from other nociceptive, interoceptive, and fatiguing illnesses.
  • The lack of energy may be caused by autoimmune and metabolomic dysfunction that reduces mitochondrial ATP production.
  • The primary goals of management are to provide a supportive healthcare environment with a team of occupational, physio, and other appropriate therapists who will manage symptoms and improve functional capacity.
  • The chronic but fluctuating disabilities require substantial lifestyle changes to plan each day's activities carefully, conserve energy resources for the most important tasks, schedule rest periods to avoid individuals overtaxing themselves, and to improve the quality of sleep.
  • Medications are not curative. Pharmacotherapy is indicated to treat pain, migraine, sleep disturbance, and comorbid conditions such as irritable bowel syndrome, anxiety, or depression.

EDITED TO ADD LINK TO FULL DOCUMENT:

https://drive.google.com/file/d/0B57eLIp17Q8MNEtlV2RnSG54N28/view
 
Last edited:
Messages
66
Thank you for highlighting this. Luckily I have a very supportive GP. However, knowing that the BMJ is acknowledging reality of ME (despite the still muddled conflation with CFS which many reduce to CF) is a helpful revelation and step forward.

Now need to transform this acknowledgement into increased biomedical research funding and awareness to counter physician/psych beliefs and theories that are misrepresentative and harmful.
 

Countrygirl

Senior Member
Messages
5,404
Location
UK
I think IiME had a hand in the new summary.

However, I couldn't view the management section, so that may still be problematical.


I found the quote below in the summary to be a welcome improvement though. The BPS mob won't like it.....neither will Esther.:rolleyes::whistle::angel:


  • The lack of energy may be caused by autoimmune and metabolomic dysfunction that reduces mitochondrial ATP production.
 

Countrygirl

Senior Member
Messages
5,404
Location
UK
Do be warned that there are sections on CBT and GET. They do mention some of the caveats, and have various cautions, but the scientific irregularities of the PACE trial, which are likely to be in other similar studies. do not receive the attention they deserve.

I did suspect this may be so, @alex3619 , but couldn't get access.

Still, it is a start and it makes it difficult for the doctor to dismiss the patient as being a fruitcake, which is so common in the UK.

In theory, we are allowed to refuse the CBT/GET nonsense, but it is never as straightforward as that of course.

We will have to provide our own information sheets for that for which there is ample evidence on this site.
 

Sean

Senior Member
Messages
7,378
Without having read the full text, and also noting Alex's caution, nonetheless I can't see much in the summary for the psychs to be pleased with.

At the very least they are clearly not front and centre of the show anymore. Which is a big step forward for us, especially considering that it is the BMJ, who have a very sorry record on ME and CFS going back decades.

Thank you to everybody who helped the BMJ to see the light. :thumbsup:

Your turn, Lancet.

You too, Psychological Medicine (the journal that gave us the still unretracted bogus recovery paper, exposed by the hard won data obtained by Alem Matthees via the FOI request).
 

Daisymay

Senior Member
Messages
754
Without having read the full text, and also noting Alex's caution, nonetheless I can't see much in the summary for the psychs to be pleased with.

At the very least they are clearly not front and centre of the show anymore. Which is a big step forward for us, especially considering that it is the BMJ, who have a very sorry record on ME and CFS going back decades.

Thank you to everybody who helped the BMJ to see the light. :thumbsup:

Your turn, Lancet.

You too, Psychological Medicine (the journal that gave us the still unretracted bogus recovery paper, exposed by the hard won data obtained by Alem Matthees via the FOI request).

I agree it think this is a big step forward for us, still many steps to go but progress.
 

Jo Best

Senior Member
Messages
1,032
I think IiME had a hand in the new summary.
It was on the agenda of the 2016 Biomedical Research into ME Colloquim (#BRMEC6):
IiME Research commented on Facebook:
The BMJ best practice was developed via discussions at our colloquium BRMEC6 - http://www.investinme.eu/BRMEC%20Colloquiums.shtml#BRMEC6 with input from the participants to the main author who had been given the task by BMJ.

Change is coming slowly as the reviewers influence things.

The old BMJ best practice was impossibly outdated and it was not an easy task to try to get past the old views - but at least the new person in charge of the rewrites is someone we trust and have worked with for a number of years.
 
Last edited:

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Still, it is a start and it makes it difficult for the doctor to dismiss the patient as being a fruitcake, which is so common in the UK.
Yes, its mostly good but still had to put the CBT and GET in there. I guess there is a good reason for that because these non-treatments are already out there. However it gave the impression there are grounds for thinking both of these work on some patients.

For example, the graded exercise section has this as a first paragraph -
Exercise programmes that are low-intensity, individualised to the patient and their personal activities, and allow for variation in effort based on each day’s symptoms will provide patients with CFS with a 'paced' approach to treatment, graded low-impact exercise, CBT, or medications
(I had to edit as the copy paste function did not work very well, I just added spaces)

Then there are some caveats such as
However, this highly generalised view and exercise prescription may not apply to the theories of metabolomics dysfunction and post-exertional malaise in CFS.

But then they go and say
Patients with CFS may tolerate an individualised activity plan developed in collaboration with knowledgeable and experienced professionals
.

However the liberal use of caveats and references to the hard science might substantially mitigate the risk of doctors misinterpreting this text. My guess is that doctors who have not investigated this before will be fine, I am more concerned about doctors who have preconceptions. I am also concerned about just who those knowledgeable professionals might be in the UK, and even in Australia.

For example, doctors who pay attention to the caveats like not exacerbating symptoms, pacing activity, and avoiding aerobic challenge might come away with a better understanding. However a hardline CBT/GET proponent might argue their approach is permitted under these guidelines.

Some advice might be very good for some patients as well, I don't want to sound negative, for example
Guidelines from the International Association for Chronic Fatigue Syndrome / Myalgic Encephalomyelitis (IACFS/ME) suggest that patients with severe CFS(i.e.,functional capacity rating of 1 to 3) may benefit from in-home assisted range-of-motion and strengthening exercises by a skilled provider as these patients are generally bedbound or homebound.

This is good advice I think, for some, but not just for any skilled professional.
 

purrsian

Senior Member
Messages
344
I did suspect this may be so, @alex3619 , but couldn't get access.

Still, it is a start and it makes it difficult for the doctor to dismiss the patient as being a fruitcake, which is so common in the UK.

In theory, we are allowed to refuse the CBT/GET nonsense, but it is never as straightforward as that of course.

We will have to provide our own information sheets for that for which there is ample evidence on this site.
True. But these guidelines give patients a lot more grounds to decline, and to remind the Dr to first do no harm.
While it gives more grounds to refuse, these caveats still present in the document give welfare organisations like Centrelink a great excuse to still require you to undergo CBT before being "fully treated" and able to get welfare. I have been rejected earlier in the year for not being fully treated due to no CBT and have appealed, but waiting to hear back. Hoping that this change to BMJ will help, but to many caveats that give not only CBT proponents leeway to argue, but also welfare organisations. I understand they don't want to say it flat out DOESN'T work, but it would be nice if they could say it is unlikely given the current theories about the disease, rather than say it might work.
 

Sean

Senior Member
Messages
7,378
While it gives more grounds to refuse, these caveats still present in the document give welfare organisations like Centrelink a great excuse to still require you to undergo CBT before being "fully treated" and able to get welfare. I have been rejected earlier in the year for not being fully treated due to no CBT and have appealed, but waiting to hear back. Hoping that this change to BMJ will help, but to many caveats that give not only CBT proponents leeway to argue, but also welfare organisations. I understand they don't want to say it flat out DOESN'T work, but it would be nice if they could say it is unlikely given the current theories about the disease, rather than say it might work.
Point taken. I still have not read the full version.